Re: Re: Any problems with walking?

[Guest guest]

Stu My hand was sore from the cane at first but I got used to it after a bit. A mate with his arm wrapped isn't too bad. I'm divorced. Can you imagine asking a date to stay over & then add "Oh, by the way, I wear Depends". LOL My son-in-law was diagnosed with lung cancer last summer. He passed away within a month. My daughter says she would have pushed his wheelchair, wiped his butt or anything else he needed if only she could have him back. Your wife is still with you so it can't be too bad. Sexy is more in our heads than our bodies!grannylunatic@...

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[Guest guest]

hows that

for sexy, imagine your man with wet towels wrapped around his arm,

heating pads on his knees and ankles, cold pak on his head for the

headaches and a pile of pill bottles sitting next to him, and you can

imagine how exciting my wifes life really at this

point!!!!!!!!!!!!!)(then of course we have to ask who is REALLY

suffering fromt his disease, me or her????)

Add the cpap mask, the oxygen concentrator billowing it's low slow, rhythm and you've got the picture at my house! It is a bugger--- and so the world turns-- can we get off! (I know, I know, not likely dressed like this!)

tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Leg weakness is a sign of progressive sarcoidosis. Rarely does it end up in paralysis-- but it does happen.

Have they done a spinal tap on you to make sure this is not MS?

I would definately bring htis up to your MD so that he can make sure that you don't have any other auto-immune thing going on.

Take care,

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

I have been on solu medrol since January plus oral prednisone. Mine started progressively last summer but I was not really paying attention to what my body was telling me as I was so busy. Memory loss, stuttering, weak in the thighs, pain in the eye and then the fatigue. I ended up with optic neuritis right before christmas and they started me on 3 IV solu medrol in January when they did MRIs and found I have 3 lesions. They were not saying it was MS until I saw a neurologist. I waited til I got into the specialist of my choice in late January who ran me through cervical MRIs and spinal taps and all the prelim bloodwork but it was a hard call. They are assuming with my prior history of sarcoid that it is neurosarcoid because all the tests of course came back within normal limits. My spinal tap was not done until I had the 3 IVs and I was on 60 mg of prednisone since that event in late December. I was on 60 mg for 2 months plus the monthly IV solu medrol. I am currently still getting the IV every 4 weeks and have been fighting. I have worked my way back to work starting the end of February starting with 4 hrs, then 6, then 8. It has been difficult as I have a high stress job and it is constant multitasking every second of the day. They were good to me when going back to work and leaving me alone and just gradually adding things back. I currently take care of my grass and yard but again, I started with only 5 minutes and I would sit down. I have to say too that the week before my IV I start stuttering more and get very frustrated as I do not have a lot of energy. This disease does take its toll. I had to go on insulin, change my eating habits, they have me on a regime of vitamins and minerals. I have had to learn to have a lot of quiet time.

My sarcoid has flared in times of stress but my last major attack was in 1980 when I was renovating this house. I was renovating again the past 1 1/2 years but I was inhaling paint fumes, floors were being sanded, new carpeting installed and a new wood floor. I know when they were cutting bamboo in the house and I walked in the house it was like something hit me. Like a ton of bricks. The next day, I lost my sight. I was not getting my rest and tons of stress when this happened. I never thought I would have another major attack. I have had erythema nodosum pop out in times of stress. They are going to space my IVs to 5 weeks and I am now on 14 mg of oral prednisone. I can only hope and pray I do not go backwards. I am fearful as I know what you are all going through. I had bladder surgery years ago only to have problems now and have to know where all the bathrooms are in the stores I frequent. This disease robs you of your dignity and I am fighting that too. The weight gain from the prednisone is horrible.

I keep praying for all of us that they find something to help. I am so thankful that I found this group as I literally felt like I was losing my mind. I did get worse in January and February. The numbness in my legs, the cramps, the twinges, dizziness, balance. But the more I had treatments the better it got for me.

Kat

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[Guest guest]

what can you tell me about progressive Sardoidosis, what little Ive

found says it means non responosive to steriods, but mine does respond

to the steriods, to an amazing degree. Menaing, by the day of the

week that I get my infusion I am almost unable to function from the

severe tremors that wrack my body from head to toe, but within several

hours of the infusion they begin to subside and by the next day are

mostly gone until the next week. So if my information is correct

about progressive Sarcoidosis this doesnt fit,,,,,,,,right???????

Say right,,,,,pretty please, I could really use some good nwes about

now.........

I'm glad that you do get the week of relief from the infusion. It is amazing that within 5-6 days you are back to non-function. That is weird-- and I'd be asking the MD why these infusions last only a week.

I'd love to tell you that this doesn't fit the NS picture. What is going on with the vertebrae in your back? I know you've had multiple MRI's-- but have they done your spine?

Have they done nerve biopsies that show any demylination? Usually it's the wrist or ankle that they choose to biopsy- easy sites to get to. We do get the demylination, but it starts at nerve ends and goes up, instead of like MS, where it starts at the spinal column and goes outward.

It really sounds like you need some other med than the steroids. Have you been on MTX or Plaquenil or Imuran? Have they considered either the Cellcept or Remicade?

Are your MRI's being done with contrast?

I know we all carry alot of extra weight courtesy of the steroids and immunosupressants. This can make a huge difference in our muscle strength, but we also end up with muscle wasting from the disease.

I'll try to find some articles on these issues-- and post them. You can copy them and give them to the Rheumi and Neurologist and see if they will run with some of the information-- you may have to get assertive, and have your wife block the exam room door, so they can't get out with just an HMMM.

Screw this disease and all it takes from us,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Kat,

It's good to hear from you. I do hope you are doing well. i know you've been battling the bugger for along time and it sounds like you're making some headway. Keep it up.

Hugs,

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Thanks Tracie. I do appreciate it I am glad I have found this group. When you start writing down all the symptoms we have and they are so similar to MS you don't know if you are crazy or not. Most especially like a lot of us where the results keep coming back normal. Grrrrrrrrrrr. I hate the weight gain. I can only hope that the prednisone continues to do the trick.

KatSee what's free at AOL.com.

[Guest guest]

So if the sarcoidosis starts from the nerve ends and works upwards yet M.S starts with the spine and works outwards.? If that's correct my symptems started with my right leg just after giving birth 14 years ago...so why did they treat me for M.S i had no spinal problems.when it got worse it went to my eyes and brain .I have tried immuran and they where no good for my liver as enzymes went up to 160. I am now on cellcept and doing well on them and have my monthly blood tests.Along with taking the dam prednislone which i need for at least two years doctors have said.I go and see my nuerologist tomorrow for my 3 monthly check he is going to be shocked as last time i seen him he was draining fluid from my head after it risen to 40 again back in april. So now i am on the cellcept and steroids i am looking lots better.

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[Guest guest]

So if the sarcoidosis starts from the nerve ends and works upwards yet M.S starts with the spine and works outwards.? If that's correct my symptems started with my right leg just after giving birth 14 years ago...so why did they treat me for M.S

It is one of the theories -- that we get the demylination in reverse so to speak. I'll try to find the articles I read that in. If I forget-- please remind me.

Here is one site:

http://www.emedicine.com/neuro/topic336.htm************************************** See what's free at http://www.aol.com.

[Guest guest]

When you start writing down all the symptoms we have and they are so similar to MS you don't know if you are crazy or not. Most especially like a lot of us where the results keep coming back normal.

Kat,

I agree, and if you research autoimmune diseases, you'll see that we paralell (sp) both MS, and Lupus. We also end up with the diabetis, the diabetic neuropathies, the Sjorgens, and more. That is why we end up going thru all the tests they have for these diseases, and once they've ruled them out-- we have NS.

I also totally agree with the issue on weight gain------ it is just another reason we've referred to this disease as suckydosis.

Hugs,

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Sue I have fluid on the brain also. I had my first shunt in 97 and last year it failed and was replaced. I was curious how did the docs drained your fluid? I am on Cytoxan and they want to give me extra steroids after the treatment for nausea. I quit taking them after gaining 50-60 pounds. Does that sound like I have a problem eating? LOL I sure hate that pred! grannylunatic@...

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[Guest guest]

Hi linda...The fluid was drained through a 24 hour lumber drain and also a shunt in my head...not kept in all the time just 24 hour although that is the next step if this keeps happening as yes i had the same procedure in 2002. But i have also had part of my skull taken away due to pressure on the back of my brain( they said was called the tonsil).I was born with malformed skull but due to now becomeing ill with the brain pressure and swelling it needed to be taken away to stop me other far more seriouse problems.I lost my father to a simalr problem and he was in a coma for 10 days before he died.....I have feeding problems but mainly swallowing and regergatation taking hours to digest food and sometimes comes back up in lumps into my nose and throat.(its horrid) but zoton tabs have helped a little as they also found hiatus hernia (please take no notice of my spellings sorry brain fog)

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