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Any advice or experience would be appreciated

I'm new to the forums and I just wanted to share the strange symptoms I've been suffering with people who have had similar experiences.  About two to three years ago there was a period for about three weeks when I had what I can only describe as altered sensation.  Things touching my skin, especially cool things, would cause an unpleasant feeling that was abnormal.  That was the only symptom I had and it went away, although it might have reoccured for a short period sometime after.  About a month to a month and a half ago the feeling of altered sensation came back but worse.  Now I was having tingling and waves of burning in my arms and legs.  I was also having some tingling in the upper back and jaw.  I did not have any vision changes or weakness, although I must admit that my left eye did feel tired (like it would be more comfortable to keep it shut) and sometimes I felt like my knees were wobbly.  I had no trouble walking, even on long walks.  I also had some twitching in my lips and right hand.  Most of the symptoms would be gone when I woke up in the morning, reoccur once I was out of bed, and fluctuate.  They were never constant.  I saw a neurologist and she said (as I knew) that my exam was normal.  She said that, without any weakness, vision changes, or incontinence, that working me up for MS right away was not necessary and that an MS exacerbation usually has certain signs and symptoms that occur, get better or worse, but do not fluctuate as mine did.  She recommended an MRI of the brain, which she said could be postponed until February or March when I got better insurance.  Since seeing her the tingling, burning, and altered sensation are pretty much gone but I've had some problems with urinary urgency.  I've never been incontinent but I've had the sensation of urinating when I'm not, burning in the tip of my penis, and having to go to the bathroom frequently.  Sometimes it bothers me a lot and sometimes I forget about it or it doesnt seem to be there.  Also I had a day or two where my left chest and back hurt and the muscles seemed tight and under pressure.  I've read about the MS hug and it worries me.  I think I may go see the neurologist and get an MRI done even though my insurance isn't really great.  What also worries me is that if I was diagnosed with something like MS, I would have trouble getting insurance--even through a job.  I am a white male from Connecticut and have no family history of MS or any other neurological problems.  Any advice, similar experiences, or words of wisdom would be appreciated.
2 Responses
Avatar universal
Hi Skeleton!!

Welcome to the forum.  This is a great place to be when you are having symptoms you can't explain.  I'm also undx, but having lots of MS like symptoms.

I'm not a dr and do not have any medical experience, but it does sound like you are having some neurological problems.  MS has many mimics and usually a good neuro will test you to eliminate these mimics.

Standard procedures, as I understand it, is to have a brain MRI, and spinal MRI, both done with and without contrast and done under MS protocol.  A 3T machine is preferrable, due to the better resolution of the films and this machines ability to see things that lower strength machines do not pick up.  Also an LP, lumbar puncture, to check for O bands.

There are many, many other tests and I can't name them all, but usually the MRIs and LP can be used to dx MS or possible MS.

We have some fantastic "health pages".  They can give you lots of good info on the mimics of MS, how to deal with your dr, the dx of MS, and many other great articles.  Just click on the health page icon in the top right hand corner and check them out.

We're all glad you're here and will help you all we can.  I think you will like everyone here, there are some very special and supportive people here.

Take care, I look forward to getting to know you better.

doni  
572651 tn?1530999357
Hi skeleton,
Welcome to this forum.  One thing that I think you may want to have checked now is very simple - do you have a UTI (urinary track infection)?  That could be the answer to your sudden urgency and burning issues.  That's a simple dip stick test that your doctor can do and tell you in minutes the results.  You are right about the dx of MS changing your insurability so please consider all those issues carefully.  HOWEVER money concerns should never trump health concerns.

I hope you will come around often and keep us posted on your progress and ask whatever questions you may have.

My best, Lulu
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