Devics? MS? Fibro? Arrrggg - Multiple Sclerosis Message Board

EStevens64 · 04-15-2005, 10:12 PM

I turned 40 and fell apart! Actually a few months prior to 40 I woke up and couldnt see. But it cleared up in a few hours. I thought it very strange and mentioned it to my gp but it was over...then a few months later it came back but didnt go away. I went to an optho and he sent me to another eye specialist (was rather shocked at how much the eye had been parted out by specialists!) and he diagnosed me with Optic Neurits. Sent me to a neuro. About a week before that appt my right arm felt weird. a dull/shock like pain..sort of like after hitting your funny bone. I thought maybe carpal tunnel? I told this to the neuro and upon examination my right leg felt kind of tingly. We discussed the connection of ON and MS and my symptoms. He did the blood work and ordered the MRI.

That weekend I fell apart. By Monday I could barely walk, my legs were numb/asleep. So weak I could barely hold myself up. It felt like when I was standing if the wind blew I would fall over. My arms felt weak and still had the shooting, dull, shocking feeling. I did the IV Steroids. I did get a bit better slowly but then the real pain came. It felt like I was badly bruised all over. Hurt like crazy! MRI of brain and spine came back clear. He said no MS. I guess I wasnt happy enough..I was relieved but also scared..I asked him "what is this then?" he didnt know. I asked if any other test could be done. He said short of an autopsy..no. He then sent a report to my GP that basically it was all in my head. I was so furious!

Now I have ON in my right eye too. Did a spinal MRI and that was again negative. They thought maybe Devic's since I am also having bladder issues. I have a sister with Systemic Lupus..did all that testing too...nope. Right after the attack of ON in the right eye I had another attack like before.

I havent had a symptom free day since October. Is this crazy or what? I just had another attack a week ago.. (the walking/standing problem). Thank goodness I have a good GP. He was pretty put out with the neuro...it seems my GP has a brother with MS and knows how frustrating the limbo can be. He also has been my dr for 27 years and knows I am not crazy. LOL he knows I drove myself to the hospital with meningitis and when I was in heavy labor with my son. I am no shrinking violet!!! lol.

Has anyone else had these kinds of issues? I understand being conservative on the diagnosis, but they really should be careful about saying it is in our head. It makes it very difficult to trust them if they wont trust us and take us seriously.

Jewel2 · 04-15-2005, 10:19 PM

Hello and welcome, though I'm sorry you had to come here in the first place.

You really are in a frustrating place. It's great that you have a good GP who believes you. I'm assuming you've discovered that MS doesn't always show on the first MRIs. Has your doctor discussed doing a lumbar puncture? Like the MRI, it can be clean at first, too, but sometimes it picks up the signs even when the MRI doesn't.

Keep a detailed journal of symptoms, time and duration, what you were doing/eating immediately before, etc. Sometimes it can help your doctor figure things out.

I know you're in a tough place, but hang in there.

Take care,
Julie

EStevens64 · 04-15-2005, 10:31 PM

My GP just found me another neuro to see. He said that he felt the LP should have been done already since I have had such extreme symptoms so early on. I know there are many from reading here that it can take a very long time. Is it normal for you to have daily symptoms. They arent constant but daily there is something. The one that really drives me crazy is when my feet sting or the inside of my left leg burns like I have a severe burn on my skin. When the Rheumotologist tested me for Lupus he suggested Fibromyalgia but he said it really didnt explain all of it. He also said I should keep working with the Neurologist. The sad part is I dont want to have MS. I just want to know what is doing all of this. Deal with it and get on with it. Does that make any sense???

Jewel2 · 04-15-2005, 10:37 PM

Yeah, it makes sense. It's always better to know what you're dealing with so you can face it head on and get on with living.

That's great you're going to see a different neuro. We went through 3 of them before finding a 'Keeper.' I hope this one works out for you.

And, yes, my daughter deals with daily symptoms. She has since her first attack. A lot of days she can deal with it okay, but some days she cries on my shoulder that she hates her body. She's only 25.

Best wishes,
Julie