I realized just now that comments haven't been posted on this site since 2009. I hope this is still working.
My symptoms started right after theH1N1 vaccination in Dec. 2009. Got immediate IVIG treatment, symptoms disappeared, but came back in late summer 2010. This time, more symptoms popped up: muscle twiching, muscle cramps, knot in throat that would move from one side to another, leg heaviness, and terrible neuropathy. The burning was all over my body. Took a while for the docs to decide to treat again with IVIG. Took longer to see results, and I cannot credit them to this, as in parallel, I also went for some homeopathic treatment. I was relatively well for a while, then got worse again,even had to use a cane to move around. Tests showed nothing. Prescribed medication, but couldn't take it for long because of allergies. 2012 was a good year for me, started working out again, but symptoms returned late September with severe numbness ( feet, legs, even face,) and a stubborn twich under my left eye. They now suspect MS, based mostly on the pattern of symptoms trigger: physical exertion, and hot baths. I also had a recurrent iritis. I am not tired, even with my severe insomnia. MRI study of neck, spine, and brain was OK, as was my EMG study, and my neuro exam. I'm scheduled for a spinal tap. If that one returns the same, I'm pretty sure I'm not going to be given any treatment whatsoever, and that scares me. I need a pair of fresh eyes, and some dedication. I should mention that my platelet count was 680 (for a max. of 400) four years before the vaccination. Did this shot open the Pandora's Box? Please help.
Thank you very much for your reply. He Unfortunately seems to be a difficult case.
I had a good look at some of the things you mentioned. I Think sjogren's has been well looked at with him. He doesn't suffer with the dry mouth or eye's.
It also concern's me he is having Mitoxantrone treatment and has hardening of the heart, but he is being very closely monitiored.
Thank's again for all the info.
Aimee.
Well, you're beyond me here. It sounds like he has a vasculitis. I did a little search and there are a few reports of livedo reticularis associated with MS. Several of them, however, occurred because of the use of Amantadine for the MS fatigue.
The arthritis and arthralgias are not part of MS - they speak to another disease process, possibly related to the Sneddon's. One article I saw linked this combination of signs and symptoms to severe Sjogren's Syndrome with neuro lesions which can involve the central nervous system and completely mimic MS, including the appearance of lesions in the brain and spinal cord. Sjogren's can also occur without the usual blood tests being positive - called Sero-Negative Sjogrens. The classic three things that are looked for in SS are 1) Dry eyes, 2) Dry mouth and 3) lymphocytic infiltration of the salivary glands and tissues of the lip. Other problems in SS are common and include uveitis (often bilateral), strokes,and arthritis - all the things that you have mentioned.
If his case is not making sense, then they might review the workup to see if the livedo reticularis, arthritis, stroke, and uveitis might all point to a different cause of neurologic damage. Of course I have no idea what they might have done to work this up, so I could be way out of line.
If he already has heart disease and reduced heart function I am surprised that he was approved for Mitoxantrone which has direct heart toxicity.
Here is a discussion between docs about finding LR in multiple sclerosis:
http://dermatology.cdlib.org/rxderm-archives/livedo-vasculitis
As far as whether this could be a primary progressive like PRMS, I would have no idea. That would have to be determined by his docs looking at his entire course. As far as how disabled one would be after any given number of years with any of the types of MS, that is unpredictable.
I'm sorry I can't help.
Quix
I just wanted to add that I have chronic iritis. I never had it prior to MS and it was not my presenting symptom, but now it seems to come back quite often. I finally started to attempt to treat it with steroid drops but it seems very resistant. It will clear and then return.
My MS Specialist, who is also a neuro-opthomologist, does relate it to MS. (In my case) They ruled out everything else long ago.
This is such a strange disease! There are so many little things that added to our big issues, seem to make our life a challenge!
I am currently in the middle of an attack that seems to be taking my mobility. It started on Friday with the iritis and then escalated from there. This one is scaring me!
Oh, and he also has arthritis in his knees, livedo reticularis and joint pain among other things.
Thank you for your replies.
I have been on the forum for some time. Was diagnosed with Clinically Isolated syndrome. Had my attack about 3 years ago. Have lesions on my spine and brain.
I asked this question in relation to a friend who has secondary progressive ms and seems to be a complicated case so we were going through his history and he seems to remember this was his presenting symptom.
He has sneddon's along with his ms, and hardening of the heart and high blood pressure. Constant eye problems, no more relapses. Recently taken off rebif and starting a mitoxantrone treatment at the moment. He walks with a cane.
He did have a stroke early on and a bout of optic neuritis. Not sure about other relapses but he said as well as the relapses he has steadily but slowly got worse. This has all been in less than a 10 year period.
They did look at lupus initially, among numerous other things but was eventually diagnosed with relapsing remitting ms.
Is there any way it could be progressive relapsing ms, or at 41 would he be more disabled?
Hi, and welcome to the forum. Michelle is right when she says that uveitis can occur with MS and even be the presenting sign. It is well-reported in the literature. It is not the most common eye manifestation of MS by far - optic neuritis is. And, generally uveitis will lead the docs to look for the other autoimmune diseases in which it is far more common like lupus, ankylosing spondylitis, etc.
What brings you to our forum?
Quix
I checked it out, see the below website. Yes, it can occur with many autoimmune disorders, such as MS.
https://health.google.com/health/ref/Autoimmune+disorders
Michelle
I don't know if Uveitis is a sx of MS. I do know much of the time it goes along with inflammation from Arthritis or trauma.
Michelle
I haven't heard about it...not even sure what it is? sorry can't help.
wobbly
dx