Need some insight

[Mikeyslost]

I have been having issues now for about a year and gone undiagnosed with anything other than a gait disorder and a neuroimmune disorder. They have done MRI's of brain, cervical, thoracic, and lumbar everything was clear with exception to a torn disc and degenerative disc disease. They have done sleep studies and only found mild sleep apnea. They did an EEG which was normal. They have not done a lp.

My symptoms include a gait disorder, extreme fatigue, cramping in my legs and twitching in my right bicep,full body muscle spasms that last 30-60mins(went on for about 2months then stopped, came back about 8weeks ago bit only happened once and has not returned), random extreme itchiness on large portion of body, foot drop several times a week, lose train of thought frequently, and sometimes feel like someone is hugging me and makes it hard to get a full breath.

I also have - type 1 diabetes
- Hashimoto thyroiditis
- vitamin d deficiency
-methylation disorder
-low testosterone

Through the research that I have done, most of my symptoms fall into ms but still cannot find a doctor to confirm or disprove my assumptions. Any thoughts, suggestions, or information would be greatly appreciated!

[cramp_n_mystyle]

One thing about it;if you follow through with the treatment for the conversion disorder,and your symptoms continue,they can't point the finger at you,like you're at fault for not doing what they said to do.Then they have to look at other possibilities!

[Mikeyslost]

I had a follow up visit with my family doc. yesterday he like me, is kinda skeptical about the conversion disorder diagnosis from the neurologist. He thinks we should still keep looking and is trying to figure out the best route to go next. My wife wants me to still be open to the conversion disorder dx so I have an appointment with a psychologist because I figure it can't hurt anything, and I've tried so many other things so there's no good reason for not at least giving this a try while I continue my quest. I appreciate everybody's thoughts and help! Hopefully we will get this figured out soon!  

[cramp_n_mystyle]

  I started "pursuing" my situation back in 2000.Since then I've had different symptoms come and go;all neurologic.I was diagnosed with Fibromyalgia in 2002.All that did was give Drs an excuse for any symptom  I came up with! It's been a very frustrating journey~one that I've occasionally felt hopeless about,and nearly given up on.But recently,I had another exacerbation;one that affected not only my eyes,but my legs which had never before been affected.I had to call my neuro's office and let them know I couldn't sleep because of  spasticity.So I've started on the generic of Zanaflex.Today I had an EEG and VER.Next month I'll have the EMG.So my neuro has decided that with this more serious turn in symptoms,to take a good look at what's going on! So keep persevering!

[anon07072023]

I don't know what the statistics are, but I have read on this forum how several people were initially diagnosed with conversion disorder.  Then, someone finally discovered that no, it's not in their head, there's actually something organically wrong.  And they were then diagnosed with the correct diagnosis.

I would be aggravated, too, if they had said that to me.

If you know something is wrong with your body, I'd say continue to pursue it.  

[immisceo]

At over 400 results, you're definitely not the first one to grapple with this diagnosis. http://www.medhelp.org/forums/search/41?utf8=%26%23x2713%3B&query=conversion+disorder

I'm not sure if any of the mentions will provide you with the information that you're looking for. To say that this is a contentious diagnosis is an understatement. DSM-5 was only released a few days ago, so who knows if the questions surrounding this are addressed.

[Mikeyslost]

So I went to the neurologist yesterday and they diagnosed me with a conversion disorder, which they claim is causing all my issues. I was told that there was no need to do further testing, and some of the tests done thus far should have never been done because I am "a classic case" for conversion disorder.

I have been told this by another neurologist, but that was only after she told me she had no idea what was wrong with me and never seen anyone else like me before. However, my old family doctor said that often this diagnosis is given for just that reason, but is typically not the correct diagnosis.

I am curious how many people are given this diagnosis prior to being correctly diagnosed. And do I just take this diagnosis or do I keep pushing for something further? Personally I feel the doctor is wrong, but if so many doctors are coming to the same conclusion, am I really the one who is wrong? I'm just so confused and aggravated.

Any advice or thoughts would be greatly appreciated!

Thanks in advance!

[Mikeyslost]

I go to see the new neurologist the 28th. Hopefully they might have some new insights! Thanks for the insights!

[kwarendorf]

I think that's a good game plan. If you are still having symptoms 12 months is a good interval between MRI's. When is your new neurologist appointment?

Keep us posted.

Kyle

[Mikeyslost]

I'm 29, I have been seeing a standard neurologist and a neurotologist, but have an appointment with one who does more with MS. I have wondered as well if they just aren't able to be seen yet myself.

I have not yet has a new set of MRI scans done yet, my first ones were done about a year ago, but I planned to see about getting a new set done at my upcoming appointment with this new neurologist.

[kwarendorf]

Hi Mikey -

Some of your symptoms are familiar MS symptoms, others not so much. You don;t mention how old your are. I ask because if this is your very first bout of MS like symptoms, there is the possibility that lesions are present, but not appearing on your MRI.

Are you going to have repeat MRI's?

Kyle

[anon07072023]

Wow, it sounds like you have a whole lot going on with you medically.

I'm like you - I'm not for sure what box to put you in (not that I want to put you in a box).  :-)   I think a little of it is because I'm not familiar with neuroimmune disorder and a couple of your other ones.  So, I'm not sure what type of symptoms can be associated with them.

Are you seeing a neurologist that specializes in MS?  Or is it a general neurologist?  I hope you can find a smart doctor to help you.

I'm sorry I'm not much help.  30-60 min full body spasms doesn't sound too good. I'm worried about that one for sure.

-Kelly