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Help! Need advice and answers...
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Scoobiegirl posted:
I was told I had Arthritis in my Ribs.
They also said over the last 20 years, I have Fibromyalgia, Chronic Fatigue Syndrome, Migraines, Diabetes, Chiari 1 Malformation, Cervical Spondylitis, 5 lesions in my Brain, Myopathy, Syringomyelia, Ruptured Disks, DDD, Possible Hydrocephalus, Depression, Anxiety, (no wonder!!!), my differential diagnosis is MS. I feel like I've been Dx'ed with everything under the Sun.
I too have heard all the typical 'lies' Doctor's tell about Dx'ing MS.
My Mother also has MS.
I would just like the pain to stop! My legs are constantly in spasms, and now my arms are starting to get like that too, instead of just the usual pins & needles, and numbness. I'm having coginitive problems with remembering words, and having difficulty getting out a full sentence without stumbling. Sometimes I'll know the word I want to say but a totally different word comes out of my mouth. It's embarrassing, and annoying / frustrating. I had a Lumbar Puncture done, and it came back clear. What they fail to mention is that in 10% of cases MS does not show up on the Oligoclonal Bands, but the person does indeed have MS. I mentioned this to my GP, and he replied, 'well, it takes years to diagnose it'. I told him I don't have years to get an answer. At the time my Employer was trying to get rid of me due to my sick time, in which I was also injured at work, ( a Patient tried to strangle me with my Lanyard). In the other testing I had done, it showed I have hearing loss in my left side, and also loss of function in my legs. I'm having trouble remembering the name of those tests at the moment, but no Optic Neuritis was found. I also have no Sense of Smell, since I was a kid. I've been told many things over the years. I cannot comprehend how one person can have so much wrong with them. I was born 4 months premature as well.
Can anyone give me any answers? Everything I've been told seems to lead to MS. I think they don't know what the problem is, so they call it Fibromyalgia. All I know is that hurts like a son of a gun! Oddly enough, the Fibromyalgia I had 15 years ago, didn't hurt as much as it does now. This is also the second time my legs have had such bad spasms, the first time was 15 years ago. This time it's been ongoing for the past 4 years, last time it lasted about 6 months.
I take Gabapentin, T3's, Baclofen, Naproxen, Lorazepam, Cesamet, but the pain is still with me, although it numbs the pain, and my Brain, quite a bit. Some days I have to walk with a cane due to severe leg spasms. Sometimes my Pelvic Region goes numb and I can't feel my legs to take a step. I also get burning sensations in my legs and arms sometimes. I also get a deep itch in my tummy, below my navel, that I can't scratch, as it seems to be on the inside. I don't wear Jeans or anything that buttons up at that spot, so I know that's not causing it.
H E L P...

Robynn
Does anyone else have these symptoms?
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hackwriter responded:
Robynn,

I'm sorry you've had such a tough time with all the diagnoses and symptoms. Your symptoms are consistent with MS and shared by most of us here, but we've also had some version of your frustrating history trying to get a diagnosis--and MS isn't always the way it shakes out. It's hard to diagnose and it can take years to rule out other diseases and fullfill the MS criteria.

If you haven't seen an MS specialist, you might want to go that route. Symptom management is really important right now, you might want to check out a pain clinic, too. I just went to one this week; I'm in the process of getting an intrathecal pump for leg spasms, pain and stiffness, it's supposed to work better than oral muscle relaxers.

I wish you well and hope you can get some answers soon.

Kim
 
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Scoobiegirl replied to hackwriter's response:
Thank You kindly Kim for your insight, and advice. I will look into it further, and ask my Doctor for a referral for another MRI, and for a second opinion. I'm going to ask him to send me to my Mom's Neurologist, who treats her MS.
I've been on the waiting list, as far as I know for about 4 years for the Pain Clinic here. I'll have to call them and see what's going on with my referral.
Does anyone have any other suggestions?


Robynn


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