Re: Jackie..Re: Donna, fibro, CFS, no lesions.....

[Guest guest]

It’s Aug. 16th. Thank you for thinking about him. I think he’s scared because he had a good friend die of a brain tumor, and [my son] has really bad headaches like his friend had, that they have been saying was migraines, but he [my son] has never been one to have headaches his whole growing up, until after that car accident. He has had black out spells too, and once was in the hosp. while visiting his newborn daughter Skylar, he just keeled over and hit the floor dead weight and his head smacked down. They didn’t even check him out after he came to, and he just sat on the bed afterwards like nothing had happened. Except I think he probably ended up with a bad headache afterwards. I wondered if he had a seizure, without convulsing, but he didn’t follow up on it. I can tell he’s had some drastic changes in the way that he thinks, and his latest Dr. said she thought he could be bi-polar. He does fit the profile, so maybe the MRI will show something to that affect? I don’t know if you can see that type of illness by an MRI? His cousin had a non-cancerous tumor on his pituitary gland that gave him awful headaches and he had surgery, but they could only take out some of it. Enough to relieve the pressure, but he’s on some kind of medicine now for the rest of his life. So I am praying they find something, but nothing serious of course! I was dxed with fibro back in 1984, and it started in my arms, and then over the years spread thru out my whole body. FM is very similar to Dercums, so the pains I have are intensified. Then there’s the MS pain, and the RSD pain. All overlap, and exhibit the same intensity, except I’m not sure which one to accuse when I get bad like that. I’ve been on oxycodone and valium for 11 years, and only upped the dose once, from 2 a day to 3, and it just barely takes the edge off at times. But I want to stay at least a little mentally functional, so I sacrifice taking a higher dose to remain lucid. Plus I doubt if I could take a higher dose because of my sensitivities. It’s kind of a catch 22. I know the worse FM pain is under my “wing†area in my back. Hips and pelvic flare up and I can hardly get up from a sitting position. Now I can’t stand for more than 5 mins before I feel I’m going to fall down. I sure would like to try some warm water therapy to see if it would help strengthen my muscles. I use to be able to stay in a hot tub for at least 20 mins before my legs turned to jello. There are places that have Hoyer lifts so that would help get me in a WWTP, and out. There’s nothing like that out here, and the closest pool is miles from me that offer that kind of therapy. I’m really gabby tonight…… lol…….Hugs, Jackie J From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Tuesday, August 09, 2011 8:30 PMTo: MSersLife Subject: Jackie..Re: Donna, fibro, CFS, no lesions..... When is your son's MRI? I'll be thinking about him every day until his results are back. I was dxed with Fibro in the early 80s when they still called it Fibrosis. I don't know if the pain in my back has anything to do with the fibro, or if it's MS or something totally different. Where is your fibro pain? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tuesday, August 9, 2011 5:53 PMSubject: RE: Donna, fibro, CFS, no lesions..... Hi Donna and Sharon,…..it seems like now if they can’t find a definitive dx, they either say its depression, or fibromyalgia. The first line of treatment for both is antidepressants, losing weight if overweight, and exercising. I have firsthand experience with all of this. Aside from the anti-d’s which I cannot tolerate, I did lose weight and dieted and it did NOTHING for my FM pain. My husband also has FM, and was told losing weight would help the pain of FM. He has lost 56 lbs, and his pain levels are higher than ever. Mine were worse too when I lost weight several years ago. The only thing we can contribute it to is the added energy from losing weight causes you to be more active. When you do too much it affects the FM, and causes it to flare. When I was in PT for FM the PT told me I had to do a snails pace exercise so it wouldn’t aggravate the FM, and then gradually work up to a longer pace. So for these Dr.s who THINK they know what treatments are the best for FM, and don’t really research it, are idiots for telling you to walk a mile in 10 mins. Ya, if you want to be in bed for 2 days. Geeeesh……..Another thing, it took me 14 yrs to get a solid dx of MS, and that’s when they did a cervical spine MRI, and found a lesion between c5-c7. My brain MRI’s showed white spots but they were reluctant to say if was MS. Spinal tap came back normal, evoked response tests came back normal. But, I had several clinical manifestations of MS including a dropped foot that I drug when I walked. Another thing, when I was walking a mile a day before I knew I had MS for sure, I did okay for the first month or so, and then one day I was so fatigued in my leg muscles I could barely make it back home. After I drug myself home I sat on the porch step and my thigh muscles ached and vibrated so deep I knew something was wrong, and I stopped my daily walks, and just went swimming instead. Eventually I had to give that up too because of the fatigue and the water was too cold for my FM. Ya I lost about 30-40 lbs, but my pain levels were as bad then as from before. My son has been having a lot of neurological symptoms for years and not once did any of the Dr.’s test him for MS. He is exhibiting the same type of symptoms I had when I was his age [35], and he seems to be going down the same path as I went down with Dr’s that don’t want to take the time to investigate thoroughly. You would think with MS on BOTH sides of our family that would be the first thing they would look for. Finally after all these years of him complaining he has found a Dr. who has ordered a brain MRI. He was in a bad car accident a few years ago and up until then NEVER had migraines. Since then he gets them quite often. You would think someone could connect the dots. Don’t lose hope, you know your body better than anyone, and eventually a Dr. will determine a definite dx for you. I hope it’s not MS, but it still would be nice to have a dx for what’s happening in your body. Can’t you go up to the U of WA and see someone in their MS clinic? Hugs, Jackie Multiple Sclerosis Neurology Clinic at UWMCAbout this ClinicThe Multiple Sclerosis Neurology Clinic is part of the Western MS Center co-directed by Dr. Sylvia Lucas. Services provided include the most current MS-related infusion therapy, including IV steroids, and other medications. We closely cooperate with other services, such as neuro-ophthalmology, urology, rehabilitation medicine, physical therapy, occupational therapy, vocational services and psychology. Our center is also involved in clinical research to find better ways to manage multiple sclerosis.The staff include MS specialty nurses who coordinate care and collaborate closely with the physicians.General Contact (Phone):General Contact (Phone):General Contact (Fax):Hours:Monday, 8:00 a.m. to 5:00 p.m.Tuesday, 8:00 a.m. to 5:00 p.m.Wednesday, 8:00 a.m. to 5:00 p.m.Thursday, 8:00 a.m. to 5:00 p.m.Friday, 8:00 a.m. to 5:00 p.m.Address:University of Washington Medical CenterSE 8301, 8th FloorBox 3560971959 N.E. Pacific St.Seattle, WA 98195 From: MSersLife [mailto:MSersLife ] On Behalf Of DonnaSent: Tuesday, August 09, 2011 4:36 PMTo: MSersLife Subject: Re: Donna, fibro, CFS, no lesions..... Hi Sharon, I spoke with a woman with the Fibromyalgia Network. She said that there is evidence that indicates a neurological connection to fibro. A friend of mine who doesn't have MS listened to me and suggested that I could have MS. She said it sounds like it anyway; but, she's not a doctor. She has a sister or cousin who has MS. It could be a mild form. I don't know. But, thanks for the link. I say: No wonder the doctors are so confused and why they want to blame depression. For everything that they can't get a concrete diagnosis. Even the Nurse Practitioner thought MS. Of course, the neurologist she sent me to told her that I was just depressed and to put me on anti-depressants. Later, the woman who used to facilitate the fibro support group said that she had heard this particular doctor was a quack. I don't know about that; but, he had told me that I should be walking a mile in 10 minutes. I have a friend who is an extremely outdoorsy type and walks her dog up Manastash Ridge nearly everyday. She said that he must have been out of his mind to suggest that. Even she couldn't walk a mile in 10 minutes.Donna in WA<html><a rel= " nofollow " target= " _blank " HREF= " http://pets.care2.com/i?p=628786495 " >Join Care2.com's Race for Pets!</a></html>Subject: Donna, fibro, CFS, no lesions.....To: " MSersLife " <MSersLife >Date: Tuesday, August 9, 2011, 10:52 AM I know of others that never had lesions show up but still got a MS dx. It really depends on the doctor I think. It doesn't matter if you have a MS dx or not--you still belong here with us! Someone here on the group said they were told MS and fibro were connected. I've never been able to find anything about that though. I do know fibro is being considered an autoimmune disorder, as is MS. This site as interesting: http://www.fibromyalgia-symptoms.org/fibromyalgia_ms.html hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, August 8, 2011 8:12 PMSubject: Re: Donna.....Re: how is everyone faring...... Sharon, I do not have an MS diagnosis. I've had one doctor say that she couldn't rule it out. Even the woman I spoke with at the MS Society said that there is a very small percentage of MS patients who do not show lesions. For now, it is being called FMS. Some fibro patients do have neurological symptoms. However, it's impossible to find a doctor who even will say that FMS is real and not all in your head. I have my lung stuff going on. Strangely, though, my lungs sound clear most of the time when the doctors listen to them. But, I do struggle with breathing at times. Also, I have Graves Disease. My thryoid seems to cycle between being overactive and underactive. Currently, I'm on medication to treat the underactivity. Also, I have CFS. Chronic Fatigue Syndrome. I really have to watch how I expend my energy. For example, I have a Parent to Parent meeting tomorrow. If my PT appointment had been scheduled for tomorrow instead of today, I would have to reschedule my PT appointment if I want to go to the meeting. I have neurological symptoms. They come and go; but, when my fatigue is at a high level, my symptoms get worse. Donna in WA

[Guest guest]

Jackie I will continue to keep you in my prayers as well as your son.

Hugs

nne

To the world you might be one person, but to one person you just might be the world""May the Lord Bless you and keep you,May the Lord Make his face shine upon you, and give you Peace...Forever"Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

Re: Donna.....Re: how is everyone faring......

Sharon, I do not have an MS diagnosis. I've had one doctor say that she couldn't rule it out. Even the woman I spoke with at the MS Society said that there is a very small percentage of MS patients who do not show lesions. For now, it is being called FMS. Some fibro patients do have neurological symptoms. However, it's impossible to find a doctor who even will say that FMS is real and not all in your head. I have my lung stuff going on. Strangely, though, my lungs sound clear most of the time when the doctors listen to them. But, I do struggle with breathing at times. Also, I have Graves Disease. My thryoid seems to cycle between being overactive and underactive. Currently, I'm on medication to treat the underactivity. Also, I have CFS. Chronic Fatigue Syndrome. I really have to watch how I expend my energy. For example, I have a Parent to Parent meeting tomorrow. If my PT appointment had been scheduled for tomorrow instead of today, I would have to reschedule my PT appointment if I want to go to the meeting. I have neurological symptoms. They come and go; but, when my fatigue is at a high level, my symptoms get worse. Donna in WA

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[Guest guest]

No, Jackie, bipolar, and most other mental illnesses will not show on an MRI - although they are doing studies to if the fMRI results may be different.  Tina

 

It’s Aug. 16th. Thank you for thinking about him. I think he’s scared because he had a good friend die of a brain tumor, and [my son] has really bad headaches like his friend had, that they have been saying was migraines, but he [my son] has never been one to have headaches his whole growing up, until after that car accident. He has had black out spells too, and once was in the hosp. while visiting his newborn daughter Skylar, he just keeled over and hit the floor dead weight and his head smacked down. They didn’t even check him out after he came to, and he just sat on the bed afterwards like nothing had happened. Except I think he probably ended up with a bad headache afterwards. I wondered if he had a seizure, without convulsing, but he didn’t follow up on it. I can tell he’s had some drastic changes in the way that he thinks, and his latest Dr. said she thought he could be bi-polar. He does fit the profile, so maybe the MRI will show something to that affect? I don’t know if you can see that type of illness by an MRI? His cousin had a non-cancerous tumor on his pituitary gland that gave him awful headaches and he had surgery, but they could only take out some of it. Enough to relieve the pressure, but he’s on some kind of medicine now for the rest of his life. So I am praying they find something, but nothing serious of course!

 I was dxed with fibro back in 1984, and it started in my arms, and then over the years spread thru out my whole body. FM is very similar to Dercums, so the pains I have are intensified. Then there’s the MS pain, and the RSD pain. All overlap, and exhibit the same intensity, except I’m not sure which one to accuse when I get bad like that. I’ve been on oxycodone and valium for 11 years, and only upped the dose once, from 2 a day to 3, and it just barely takes the edge off at times. But I want to stay at least a little mentally functional, so I sacrifice taking a higher dose to remain lucid. Plus I doubt if I could take a higher dose because of my sensitivities. It’s kind of a catch 22. I know the worse FM pain is under my “wing” area in my back. Hips and pelvic flare up and I can hardly get up from a sitting position. Now I can’t stand for more than 5 mins before I feel I’m going to fall down.

I sure would like to try some warm water therapy to see if it would help strengthen my muscles. I use to be able to stay in a hot tub for at least 20 mins before my legs turned to jello. There are places that have Hoyer lifts so that would help get me in a WWTP, and out. There’s nothing like that out here, and the closest pool is miles from me that offer that kind of therapy.

I’m really gabby tonight…… lol…….Hugs, Jackie J

[Guest guest]

Jackie......I also have chronic pain in my "wing" area. Challis has had pain in the same area for years and has recently been going to physical therapy for that pain as well as neck pain. I have been through PT several times over the years for that particular pain and it just does not help. Have you been to PT for that pain? If so, did it help you?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or

defects. To: MSersLife Sent: Tuesday, August 9, 2011 11:40 PMSubject: RE: Jackie..Re: Donna, fibro, CFS, no lesions.....

It’s Aug. 16th. Thank you for thinking about him. I think he’s scared because he had a good friend die of a brain tumor, and [my son] has really bad headaches like his friend had, that they have been saying was migraines, but he [my son] has never been one to have headaches his whole growing up, until after that car accident. He has had black out spells too, and once was in the hosp. while visiting his newborn daughter Skylar, he just keeled over and hit the floor dead weight and his head smacked down. They didn’t even check him out after he came to, and he just sat on the bed afterwards like nothing had happened. Except I think he probably ended up with a bad headache afterwards. I wondered if he had a seizure, without convulsing, but he didn’t follow up on it. I can tell he’s had some

drastic changes in the way that he thinks, and his latest Dr. said she thought he could be bi-polar. He does fit the profile, so maybe the MRI will show something to that affect? I don’t know if you can see that type of illness by an MRI? His cousin had a non-cancerous tumor on his pituitary gland that gave him awful headaches and he had surgery, but they could only take out some of it. Enough to relieve the pressure, but he’s on some kind of medicine now for the rest of his life. So I am praying they find something, but nothing serious of course! I was dxed with fibro back in 1984, and it started in my arms, and then over the years spread thru out my whole body. FM is very similar to Dercums, so the pains I have are

intensified. Then there’s the MS pain, and the RSD pain. All overlap, and exhibit the same intensity, except I’m not sure which one to accuse when I get bad like that. I’ve been on oxycodone and valium for 11 years, and only upped the dose once, from 2 a day to 3, and it just barely takes the edge off at times. But I want to stay at least a little mentally functional, so I sacrifice taking a higher dose to remain lucid. Plus I doubt if I could take a higher dose because of my sensitivities. It’s kind of a catch 22. I know the worse FM pain is under my “wing†area in my back. Hips and pelvic flare up and I can hardly get up from a sitting position. Now I can’t stand for more than 5 mins before I feel I’m going to fall down. I sure would like to try some warm water therapy to see if it would help strengthen my muscles. I use to be

able to stay in a hot tub for at least 20 mins before my legs turned to jello. There are places that have Hoyer lifts so that would help get me in a WWTP, and out. There’s nothing like that out here, and the closest pool is miles from me that offer that kind of therapy. I’m really gabby tonight…… lol…….Hugs, Jackie J From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Tuesday, August 09, 2011 8:30 PMTo: MSersLife Subject: Jackie..Re: Donna, fibro, CFS, no lesions..... When is your son's MRI? I'll be thinking about him every day until his results are back. I was dxed with Fibro in the early 80s when they still called it Fibrosis. I don't know if the pain in my back has anything to do with the fibro, or if it's MS or something totally different. Where is your fibro pain? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tuesday, August 9, 2011 5:53 PMSubject: RE: Donna, fibro, CFS, no

lesions..... Hi Donna and Sharon,…..it seems like now if they can’t find a definitive dx, they either say its depression, or fibromyalgia. The first line of treatment for both is antidepressants, losing weight if overweight, and exercising. I have firsthand experience with all of this. Aside from the anti-d’s which I cannot tolerate, I did lose weight and dieted and it did NOTHING for my FM pain. My husband also has FM, and was told losing weight would help the pain of FM. He has lost 56 lbs, and his pain levels are higher than ever. Mine were worse too when I lost weight several years ago. The only thing we can contribute it to is the

added energy from losing weight causes you to be more active. When you do too much it affects the FM, and causes it to flare. When I was in PT for FM the PT told me I had to do a snails pace exercise so it wouldn’t aggravate the FM, and then gradually work up to a longer pace. So for these Dr.s who THINK they know what treatments are the best for FM, and don’t really research it, are idiots for telling you to walk a mile in 10 mins. Ya, if you want to be in bed for 2 days. Geeeesh……..Another thing, it took me 14 yrs to get a solid dx of MS, and that’s when they did a cervical spine MRI, and found a lesion between c5-c7. My brain MRI’s showed white spots but they were reluctant to say if was MS. Spinal tap came back normal, evoked response tests came back normal. But, I had several

clinical manifestations of MS including a dropped foot that I drug when I walked. Another thing, when I was walking a mile a day before I knew I had MS for sure, I did okay for the first month or so, and then one day I was so fatigued in my leg muscles I could barely make it back home. After I drug myself home I sat on the porch step and my thigh muscles ached and vibrated so deep I knew something was wrong, and I stopped my daily walks, and just went swimming instead. Eventually I had to give that up too because of the fatigue and the water was too cold for my FM. Ya I lost about 30-40 lbs, but my pain levels were as bad then as

from before. My son has been having a lot of neurological symptoms for years and not once did any of the Dr.’s test him for MS. He is exhibiting the same type of symptoms I had when I was his age [35], and he seems to be going down the same path as I went down with Dr’s that don’t want to take the time to investigate thoroughly. You would think with MS on BOTH sides of our family that would be the first thing they would look for. Finally after all these years of him complaining he has found a Dr. who has ordered a brain MRI. He was in a bad car accident a few years ago and up until then NEVER had migraines. Since then he gets them quite often. You would think someone could connect the dots. Don’t lose hope, you know your body better than anyone, and eventually a Dr. will determine a definite dx for you. I hope it’s not MS, but it still would be nice to have a dx for what’s happening in your body. Can’t you go up to the U of WA and see someone in their MS clinic? Hugs, Jackie Multiple Sclerosis Neurology Clinic at UWMCAbout this ClinicThe Multiple Sclerosis Neurology Clinic is part of the Western MS Center co-directed by Dr. Sylvia Lucas. Services provided include the most current MS-related infusion therapy, including IV steroids, and other medications. We closely cooperate with other services, such as neuro-ophthalmology, urology, rehabilitation medicine, physical therapy, occupational therapy, vocational services and psychology. Our center is also involved in clinical research to find better ways to manage multiple sclerosis.The staff include MS specialty nurses who coordinate care and collaborate closely with the physicians.General Contact (Phone):General Contact (Phone):General Contact (Fax):Hours:Monday, 8:00 a.m. to 5:00 p.m.Tuesday, 8:00 a.m. to 5:00 p.m.Wednesday, 8:00 a.m. to 5:00 p.m.Thursday, 8:00 a.m. to 5:00 p.m.Friday, 8:00 a.m. to 5:00 p.m.Address:University of Washington Medical CenterSE 8301, 8th FloorBox 3560971959 N.E. Pacific St.Seattle, WA 98195 From: MSersLife [mailto:MSersLife ] On Behalf Of DonnaSent: Tuesday, August 09, 2011 4:36 PMTo:

MSersLife Subject: Re: Donna, fibro, CFS, no lesions..... Hi Sharon, I spoke with a woman with the Fibromyalgia Network. She said that there is evidence that indicates a neurological connection to fibro. A friend of mine who doesn't have MS listened to me and suggested that I could have MS. She said it sounds like it anyway; but, she's not a doctor. She has a sister or cousin who has

MS. It could be a mild form. I don't know. But, thanks for the link. I say: No wonder the doctors are so confused and why they want to blame depression. For everything that they can't get a concrete diagnosis. Even the Nurse Practitioner thought MS. Of course, the neurologist she sent me to told her that I was just depressed and to put me on anti-depressants. Later, the woman who used to facilitate the fibro support group said that she had heard this particular doctor was a quack. I don't know about that; but, he had told me that I should be walking a mile in 10 minutes. I have a friend who is an extremely outdoorsy type and walks her dog up Manastash Ridge nearly everyday. She said that he must have been out of his mind to suggest that. Even she couldn't walk a mile in 10 minutes.Donna in WA<html><a rel="nofollow" target="_blank" HREF="http://pets.care2.com/i?p=628786495">Join Care2.com's Race for Pets!</a></html>Subject: Donna, fibro, CFS, no lesions.....To: "MSersLife " <MSersLife >Date: Tuesday, August 9, 2011, 10:52 AM I know of others that never had lesions show up but still got a MS dx. It really depends on the doctor I think. It doesn't matter if you have a MS dx or not--you still belong here with us! Someone

here on the group said they were told MS and fibro were connected. I've never been able to find anything about that though. I do know fibro is being considered an autoimmune disorder, as is MS. This site as interesting: http://www.fibromyalgia-symptoms.org/fibromyalgia_ms.html hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, August 8, 2011 8:12 PMSubject: Re: Donna.....Re: how is everyone faring...... Sharon, I do not have an MS diagnosis. I've had one doctor say that she couldn't rule it out. Even the woman I spoke

with at the MS Society said that there is a very small percentage of MS patients who do not show lesions. For now, it is being called FMS. Some fibro patients do have neurological symptoms. However, it's impossible to find a doctor who even will say that FMS is real and not all in your head. I have my lung stuff going on. Strangely, though, my lungs sound clear most of the time when the doctors listen to them. But, I do struggle with breathing at times. Also, I have Graves Disease. My thryoid seems to cycle between being overactive and underactive. Currently, I'm on medication to treat the underactivity. Also, I have CFS. Chronic Fatigue Syndrome. I really have to watch how I expend my energy. For example, I have a Parent to Parent meeting tomorrow. If my PT appointment had been scheduled for tomorrow instead of today, I would have to reschedule

my PT appointment if I want to go to the meeting. I have neurological symptoms. They come and go; but, when my fatigue is at a high level, my symptoms get worse. Donna in WA

[Guest guest]

The only PT I’ve had is Steve putting a pain gel and massaging it in, and that does help. We use Super Blue Emu gel, and its quite affective. Just massage doesn’t help without some kind of pain relief gel or cream. So I am assuming it’s the gel that gives the relief. The pain comes back after a while  tho. L  Hugs, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Wednesday, August 10, 2011 10:18 AMTo: MSersLife Subject: Re: Jackie..Re: Donna, fibro, CFS, no lesions..... Jackie......I also have chronic pain in my " wing " area. Challis has had pain in the same area for years and has recently been going to physical therapy for that pain as well as neck pain. I have been through PT several times over the years for that particular pain and it just does not help. Have you been to PT for that pain? If so, did it help you? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tuesday, August 9, 2011 11:40 PMSubject: RE: Jackie..Re: Donna, fibro, CFS, no lesions..... It’s Aug. 16th. Thank you for thinking about him. I think he’s scared because he had a good friend die of a brain tumor, and [my son] has really bad headaches like his friend had, that they have been saying was migraines, but he [my son] has never been one to have headaches his whole growing up, until after that car accident. He has had black out spells too, and once was in the hosp. while visiting his newborn daughter Skylar, he just keeled over and hit the floor dead weight and his head smacked down. They didn’t even check him out after he came to, and he just sat on the bed afterwards like nothing had happened. Except I think he probably ended up with a bad headache afterwards. I wondered if he had a seizure, without convulsing, but he didn’t follow up on it. I can tell he’s had some drastic changes in the way that he thinks, and his latest Dr. said she thought he could be bi-polar. He does fit the profile, so maybe the MRI will show something to that affect? I don’t know if you can see that type of illness by an MRI? His cousin had a non-cancerous tumor on his pituitary gland that gave him awful headaches and he had surgery, but they could only take out some of it. Enough to relieve the pressure, but he’s on some kind of medicine now for the rest of his life. So I am praying they find something, but nothing serious of course! I was dxed with fibro back in 1984, and it started in my arms, and then over the years spread thru out my whole body. FM is very similar to Dercums, so the pains I have are intensified. Then there’s the MS pain, and the RSD pain. All overlap, and exhibit the same intensity, except I’m not sure which one to accuse when I get bad like that. I’ve been on oxycodone and valium for 11 years, and only upped the dose once, from 2 a day to 3, and it just barely takes the edge off at times. But I want to stay at least a little mentally functional, so I sacrifice taking a higher dose to remain lucid. Plus I doubt if I could take a higher dose because of my sensitivities. It’s kind of a catch 22. I know the worse FM pain is under my “wing†area in my back. Hips and pelvic flare up and I can hardly get up from a sitting position. Now I can’t stand for more than 5 mins before I feel I’m going to fall down. I sure would like to try some warm water therapy to see if it would help strengthen my muscles. I use to be able to stay in a hot tub for at least 20 mins before my legs turned to jello. There are places that have Hoyer lifts so that would help get me in a WWTP, and out. There’s nothing like that out here, and the closest pool is miles from me that offer that kind of therapy. I’m really gabby tonight…… lol…….Hugs, Jackie J From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Tuesday, August 09, 2011 8:30 PMTo: MSersLife Subject: Jackie..Re: Donna, fibro, CFS, no lesions..... When is your son's MRI? I'll be thinking about him every day until his results are back. I was dxed with Fibro in the early 80s when they still called it Fibrosis. I don't know if the pain in my back has anything to do with the fibro, or if it's MS or something totally different. Where is your fibro pain? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tuesday, August 9, 2011 5:53 PMSubject: RE: Donna, fibro, CFS, no lesions..... Hi Donna and Sharon,…..it seems like now if they can’t find a definitive dx, they either say its depression, or fibromyalgia. The first line of treatment for both is antidepressants, losing weight if overweight, and exercising. I have firsthand experience with all of this. Aside from the anti-d’s which I cannot tolerate, I did lose weight and dieted and it did NOTHING for my FM pain. My husband also has FM, and was told losing weight would help the pain of FM. He has lost 56 lbs, and his pain levels are higher than ever. Mine were worse too when I lost weight several years ago. The only thing we can contribute it to is the added energy from losing weight causes you to be more active. When you do too much it affects the FM, and causes it to flare. When I was in PT for FM the PT told me I had to do a snails pace exercise so it wouldn’t aggravate the FM, and then gradually work up to a longer pace. So for these Dr.s who THINK they know what treatments are the best for FM, and don’t really research it, are idiots for telling you to walk a mile in 10 mins. Ya, if you want to be in bed for 2 days. Geeeesh……..Another thing, it took me 14 yrs to get a solid dx of MS, and that’s when they did a cervical spine MRI, and found a lesion between c5-c7. My brain MRI’s showed white spots but they were reluctant to say if was MS. Spinal tap came back normal, evoked response tests came back normal. But, I had several clinical manifestations of MS including a dropped foot that I drug when I walked. Another thing, when I was walking a mile a day before I knew I had MS for sure, I did okay for the first month or so, and then one day I was so fatigued in my leg muscles I could barely make it back home. After I drug myself home I sat on the porch step and my thigh muscles ached and vibrated so deep I knew something was wrong, and I stopped my daily walks, and just went swimming instead. Eventually I had to give that up too because of the fatigue and the water was too cold for my FM. Ya I lost about 30-40 lbs, but my pain levels were as bad then as from before. My son has been having a lot of neurological symptoms for years and not once did any of the Dr.’s test him for MS. He is exhibiting the same type of symptoms I had when I was his age [35], and he seems to be going down the same path as I went down with Dr’s that don’t want to take the time to investigate thoroughly. You would think with MS on BOTH sides of our family that would be the first thing they would look for. Finally after all these years of him complaining he has found a Dr. who has ordered a brain MRI. He was in a bad car accident a few years ago and up until then NEVER had migraines. Since then he gets them quite often. You would think someone could connect the dots. Don’t lose hope, you know your body better than anyone, and eventually a Dr. will determine a definite dx for you. I hope it’s not MS, but it still would be nice to have a dx for what’s happening in your body. Can’t you go up to the U of WA and see someone in their MS clinic? Hugs, Jackie Multiple Sclerosis Neurology Clinic at UWMCAbout this ClinicThe Multiple Sclerosis Neurology Clinic is part of the Western MS Center co-directed by Dr. Sylvia Lucas. Services provided include the most current MS-related infusion therapy, including IV steroids, and other medications. We closely cooperate with other services, such as neuro-ophthalmology, urology, rehabilitation medicine, physical therapy, occupational therapy, vocational services and psychology. Our center is also involved in clinical research to find better ways to manage multiple sclerosis.The staff include MS specialty nurses who coordinate care and collaborate closely with the physicians.General Contact (Phone):General Contact (Phone):General Contact (Fax):Hours:Monday, 8:00 a.m. to 5:00 p.m.Tuesday, 8:00 a.m. to 5:00 p.m.Wednesday, 8:00 a.m. to 5:00 p.m.Thursday, 8:00 a.m. to 5:00 p.m.Friday, 8:00 a.m. to 5:00 p.m.Address:University of Washington Medical CenterSE 8301, 8th FloorBox 3560971959 N.E. Pacific St.Seattle, WA 98195 From: MSersLife [mailto:MSersLife ] On Behalf Of DonnaSent: Tuesday, August 09, 2011 4:36 PMTo: MSersLife Subject: Re: Donna, fibro, CFS, no lesions..... Hi Sharon, I spoke with a woman with the Fibromyalgia Network. She said that there is evidence that indicates a neurological connection to fibro. A friend of mine who doesn't have MS listened to me and suggested that I could have MS. She said it sounds like it anyway; but, she's not a doctor. She has a sister or cousin who has MS. It could be a mild form. I don't know. But, thanks for the link. I say: No wonder the doctors are so confused and why they want to blame depression. For everything that they can't get a concrete diagnosis. Even the Nurse Practitioner thought MS. Of course, the neurologist she sent me to told her that I was just depressed and to put me on anti-depressants. Later, the woman who used to facilitate the fibro support group said that she had heard this particular doctor was a quack. I don't know about that; but, he had told me that I should be walking a mile in 10 minutes. I have a friend who is an extremely outdoorsy type and walks her dog up Manastash Ridge nearly everyday. She said that he must have been out of his mind to suggest that. Even she couldn't walk a mile in 10 minutes.Donna in WA<html><a rel= " nofollow " target= " _blank " HREF= " http://pets.care2.com/i?p=628786495 " >Join Care2.com's Race for Pets!</a></html>Subject: Donna, fibro, CFS, no lesions.....To: " MSersLife " <MSersLife >Date: Tuesday, August 9, 2011, 10:52 AM I know of others that never had lesions show up but still got a MS dx. It really depends on the doctor I think. It doesn't matter if you have a MS dx or not--you still belong here with us! Someone here on the group said they were told MS and fibro were connected. I've never been able to find anything about that though. I do know fibro is being considered an autoimmune disorder, as is MS. This site as interesting: http://www.fibromyalgia-symptoms.org/fibromyalgia_ms.html hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, August 8, 2011 8:12 PMSubject: Re: Donna.....Re: how is everyone faring...... Sharon, I do not have an MS diagnosis. I've had one doctor say that she couldn't rule it out. Even the woman I spoke with at the MS Society said that there is a very small percentage of MS patients who do not show lesions. For now, it is being called FMS. Some fibro patients do have neurological symptoms. However, it's impossible to find a doctor who even will say that FMS is real and not all in your head. I have my lung stuff going on. Strangely, though, my lungs sound clear most of the time when the doctors listen to them. But, I do struggle with breathing at times. Also, I have Graves Disease. My thryoid seems to cycle between being overactive and underactive. Currently, I'm on medication to treat the underactivity. Also, I have CFS. Chronic Fatigue Syndrome. I really have to watch how I expend my energy. For example, I have a Parent to Parent meeting tomorrow. If my PT appointment had been scheduled for tomorrow instead of today, I would have to reschedule my PT appointment if I want to go to the meeting. I have neurological symptoms. They come and go; but, when my fatigue is at a high level, my symptoms get worse. Donna in WA

[Guest guest]

The only PT I’ve had is Steve putting a pain gel and massaging it in, and that does help. We use Super Blue Emu gel, and its quite affective. Just massage doesn’t help without some kind of pain relief gel or cream. So I am assuming it’s the gel that gives the relief. The pain comes back after a while  tho. L  Hugs, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Wednesday, August 10, 2011 10:18 AMTo: MSersLife Subject: Re: Jackie..Re: Donna, fibro, CFS, no lesions..... Jackie......I also have chronic pain in my " wing " area. Challis has had pain in the same area for years and has recently been going to physical therapy for that pain as well as neck pain. I have been through PT several times over the years for that particular pain and it just does not help. Have you been to PT for that pain? If so, did it help you? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tuesday, August 9, 2011 11:40 PMSubject: RE: Jackie..Re: Donna, fibro, CFS, no lesions..... It’s Aug. 16th. Thank you for thinking about him. I think he’s scared because he had a good friend die of a brain tumor, and [my son] has really bad headaches like his friend had, that they have been saying was migraines, but he [my son] has never been one to have headaches his whole growing up, until after that car accident. He has had black out spells too, and once was in the hosp. while visiting his newborn daughter Skylar, he just keeled over and hit the floor dead weight and his head smacked down. They didn’t even check him out after he came to, and he just sat on the bed afterwards like nothing had happened. Except I think he probably ended up with a bad headache afterwards. I wondered if he had a seizure, without convulsing, but he didn’t follow up on it. I can tell he’s had some drastic changes in the way that he thinks, and his latest Dr. said she thought he could be bi-polar. He does fit the profile, so maybe the MRI will show something to that affect? I don’t know if you can see that type of illness by an MRI? His cousin had a non-cancerous tumor on his pituitary gland that gave him awful headaches and he had surgery, but they could only take out some of it. Enough to relieve the pressure, but he’s on some kind of medicine now for the rest of his life. So I am praying they find something, but nothing serious of course! I was dxed with fibro back in 1984, and it started in my arms, and then over the years spread thru out my whole body. FM is very similar to Dercums, so the pains I have are intensified. Then there’s the MS pain, and the RSD pain. All overlap, and exhibit the same intensity, except I’m not sure which one to accuse when I get bad like that. I’ve been on oxycodone and valium for 11 years, and only upped the dose once, from 2 a day to 3, and it just barely takes the edge off at times. But I want to stay at least a little mentally functional, so I sacrifice taking a higher dose to remain lucid. Plus I doubt if I could take a higher dose because of my sensitivities. It’s kind of a catch 22. I know the worse FM pain is under my “wing†area in my back. Hips and pelvic flare up and I can hardly get up from a sitting position. Now I can’t stand for more than 5 mins before I feel I’m going to fall down. I sure would like to try some warm water therapy to see if it would help strengthen my muscles. I use to be able to stay in a hot tub for at least 20 mins before my legs turned to jello. There are places that have Hoyer lifts so that would help get me in a WWTP, and out. There’s nothing like that out here, and the closest pool is miles from me that offer that kind of therapy. I’m really gabby tonight…… lol…….Hugs, Jackie J From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Tuesday, August 09, 2011 8:30 PMTo: MSersLife Subject: Jackie..Re: Donna, fibro, CFS, no lesions..... When is your son's MRI? I'll be thinking about him every day until his results are back. I was dxed with Fibro in the early 80s when they still called it Fibrosis. I don't know if the pain in my back has anything to do with the fibro, or if it's MS or something totally different. Where is your fibro pain? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tuesday, August 9, 2011 5:53 PMSubject: RE: Donna, fibro, CFS, no lesions..... Hi Donna and Sharon,…..it seems like now if they can’t find a definitive dx, they either say its depression, or fibromyalgia. The first line of treatment for both is antidepressants, losing weight if overweight, and exercising. I have firsthand experience with all of this. Aside from the anti-d’s which I cannot tolerate, I did lose weight and dieted and it did NOTHING for my FM pain. My husband also has FM, and was told losing weight would help the pain of FM. He has lost 56 lbs, and his pain levels are higher than ever. Mine were worse too when I lost weight several years ago. The only thing we can contribute it to is the added energy from losing weight causes you to be more active. When you do too much it affects the FM, and causes it to flare. When I was in PT for FM the PT told me I had to do a snails pace exercise so it wouldn’t aggravate the FM, and then gradually work up to a longer pace. So for these Dr.s who THINK they know what treatments are the best for FM, and don’t really research it, are idiots for telling you to walk a mile in 10 mins. Ya, if you want to be in bed for 2 days. Geeeesh……..Another thing, it took me 14 yrs to get a solid dx of MS, and that’s when they did a cervical spine MRI, and found a lesion between c5-c7. My brain MRI’s showed white spots but they were reluctant to say if was MS. Spinal tap came back normal, evoked response tests came back normal. But, I had several clinical manifestations of MS including a dropped foot that I drug when I walked. Another thing, when I was walking a mile a day before I knew I had MS for sure, I did okay for the first month or so, and then one day I was so fatigued in my leg muscles I could barely make it back home. After I drug myself home I sat on the porch step and my thigh muscles ached and vibrated so deep I knew something was wrong, and I stopped my daily walks, and just went swimming instead. Eventually I had to give that up too because of the fatigue and the water was too cold for my FM. Ya I lost about 30-40 lbs, but my pain levels were as bad then as from before. My son has been having a lot of neurological symptoms for years and not once did any of the Dr.’s test him for MS. He is exhibiting the same type of symptoms I had when I was his age [35], and he seems to be going down the same path as I went down with Dr’s that don’t want to take the time to investigate thoroughly. You would think with MS on BOTH sides of our family that would be the first thing they would look for. Finally after all these years of him complaining he has found a Dr. who has ordered a brain MRI. He was in a bad car accident a few years ago and up until then NEVER had migraines. Since then he gets them quite often. You would think someone could connect the dots. Don’t lose hope, you know your body better than anyone, and eventually a Dr. will determine a definite dx for you. I hope it’s not MS, but it still would be nice to have a dx for what’s happening in your body. Can’t you go up to the U of WA and see someone in their MS clinic? Hugs, Jackie Multiple Sclerosis Neurology Clinic at UWMCAbout this ClinicThe Multiple Sclerosis Neurology Clinic is part of the Western MS Center co-directed by Dr. Sylvia Lucas. Services provided include the most current MS-related infusion therapy, including IV steroids, and other medications. We closely cooperate with other services, such as neuro-ophthalmology, urology, rehabilitation medicine, physical therapy, occupational therapy, vocational services and psychology. Our center is also involved in clinical research to find better ways to manage multiple sclerosis.The staff include MS specialty nurses who coordinate care and collaborate closely with the physicians.General Contact (Phone):General Contact (Phone):General Contact (Fax):Hours:Monday, 8:00 a.m. to 5:00 p.m.Tuesday, 8:00 a.m. to 5:00 p.m.Wednesday, 8:00 a.m. to 5:00 p.m.Thursday, 8:00 a.m. to 5:00 p.m.Friday, 8:00 a.m. to 5:00 p.m.Address:University of Washington Medical CenterSE 8301, 8th FloorBox 3560971959 N.E. Pacific St.Seattle, WA 98195 From: MSersLife [mailto:MSersLife ] On Behalf Of DonnaSent: Tuesday, August 09, 2011 4:36 PMTo: MSersLife Subject: Re: Donna, fibro, CFS, no lesions..... Hi Sharon, I spoke with a woman with the Fibromyalgia Network. She said that there is evidence that indicates a neurological connection to fibro. A friend of mine who doesn't have MS listened to me and suggested that I could have MS. She said it sounds like it anyway; but, she's not a doctor. She has a sister or cousin who has MS. It could be a mild form. I don't know. But, thanks for the link. I say: No wonder the doctors are so confused and why they want to blame depression. For everything that they can't get a concrete diagnosis. Even the Nurse Practitioner thought MS. Of course, the neurologist she sent me to told her that I was just depressed and to put me on anti-depressants. Later, the woman who used to facilitate the fibro support group said that she had heard this particular doctor was a quack. I don't know about that; but, he had told me that I should be walking a mile in 10 minutes. I have a friend who is an extremely outdoorsy type and walks her dog up Manastash Ridge nearly everyday. She said that he must have been out of his mind to suggest that. Even she couldn't walk a mile in 10 minutes.Donna in WA<html><a rel= " nofollow " target= " _blank " HREF= " http://pets.care2.com/i?p=628786495 " >Join Care2.com's Race for Pets!</a></html>Subject: Donna, fibro, CFS, no lesions.....To: " MSersLife " <MSersLife >Date: Tuesday, August 9, 2011, 10:52 AM I know of others that never had lesions show up but still got a MS dx. It really depends on the doctor I think. It doesn't matter if you have a MS dx or not--you still belong here with us! Someone here on the group said they were told MS and fibro were connected. I've never been able to find anything about that though. I do know fibro is being considered an autoimmune disorder, as is MS. This site as interesting: http://www.fibromyalgia-symptoms.org/fibromyalgia_ms.html hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, August 8, 2011 8:12 PMSubject: Re: Donna.....Re: how is everyone faring...... Sharon, I do not have an MS diagnosis. I've had one doctor say that she couldn't rule it out. Even the woman I spoke with at the MS Society said that there is a very small percentage of MS patients who do not show lesions. For now, it is being called FMS. Some fibro patients do have neurological symptoms. However, it's impossible to find a doctor who even will say that FMS is real and not all in your head. I have my lung stuff going on. Strangely, though, my lungs sound clear most of the time when the doctors listen to them. But, I do struggle with breathing at times. Also, I have Graves Disease. My thryoid seems to cycle between being overactive and underactive. Currently, I'm on medication to treat the underactivity. Also, I have CFS. Chronic Fatigue Syndrome. I really have to watch how I expend my energy. For example, I have a Parent to Parent meeting tomorrow. If my PT appointment had been scheduled for tomorrow instead of today, I would have to reschedule my PT appointment if I want to go to the meeting. I have neurological symptoms. They come and go; but, when my fatigue is at a high level, my symptoms get worse. Donna in WA