RE: Donna, fibro, CFS, no lesions.....

August 9, 2011

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>

</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.htmlhugs 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

August 9, 2011

There is so much confusion and so many different opinions in the medical community. I was dxed with MS in 1998 by one of the best neuros in Phoenix. Later I was told by two different neuros that I didn't have MS. But I've been told by more that I do. lol It's no wonder so many MSers doubt themselves, their diagnosis and their sanity. 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 4:35 PMSubject: 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>

</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.htmlhugs 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

August 9, 2011

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

August 9, 2011

I went thru this too, and then I was told that not all neurologist know much about MS unless they SPECIALIZE in it. I got my dx from a Neuro-diagnostician, and he said all he had to do is look at my clinical symptoms and he could tell I had MS. He was the one who ordered the cervical MRI, and sure enough there was the lesion. Hugs, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Tuesday, August 09, 2011 4:41 PMTo: MSersLife Subject: Re: Donna, fibro, CFS, no lesions..... There is so much confusion and so many different opinions in the medical community. I was dxed with MS in 1998 by one of the best neuros in Phoenix. Later I was told by two different neuros that I didn't have MS. But I've been told by more that I do. lol It's no wonder so many MSers doubt themselves, their diagnosis and their sanity. 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 4:35 PMSubject: 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

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