Avatar universal

Lots of symptoms but no diagnosis, asking for help or similar stories

My journey started about 6 years ago while I was standing at the sink.  I suddenly felt this burning sensation by my left shoulder blade.  I remember precisely because I looked at my husband and told him I had the weirdest sensation ever.  Since then, I have had similar sensation in spots all over my body and at times would look down because it felt as though I spilled something on myself but nothing there.  This continued for quite awhile.  

I went to my doctor who referred me to neurologist.  They did a MRI which showed nothing, so I was dismissed from him.  However the symptoms continued.  I then started getting muscle twitches in different areas of my body.  But in one spot for days.  Then the next time a different spot for days.  Then my eyes started moving quickly back and forth uncontrollably but would notice more when I was tired or when I quickly moved my eyes to look at something down from my computer or when I would write.

I ended up going back to my doctor probably a year or two later who then referred me to a rheumatologist.  All my blood work was normal except for inflammation so they dismissed me.

I was then referred to a different neurologist who again found nothing, except for hyperflexia and put me on gabapentin for nerve stuff and muscle relaxer.  He would not respond to my calls or anything so I stopped seeing him, so frustrating.

After that I went back to my family doctor and at some point was prescribed cymbalta, however I did not like taking it so I stopped.  When I stopped I had what I was assuming horrible withdrawal symptoms.  All my nerve issues magnified and had terrible shooting electric pain going through my entire body for months.  It was so bad that I had issues working, staying focused, sleeping, home life, etc.  I talked to my doctor multiple times but no one was able to tell me if this was normal in stopping the med.  Those symptoms finally subsided but the normal day to day sensations and muscle twitches and spasms continued.  I started noticing that I had trouble recalling the most basic words - they just wouldn't come to mind.  Then the next day, no problem recalling words.  So weird.  I also started having tingling all down one of my legs at a time, almost like I had the goose bumps but no bumps.  Then continued to happen quite frequently and still does but now it starts on my head, just one side, and goes all the way down my body.

After this, I got pregnant and during the pregnancy the symptoms seemed to fade somewhat or I was just not as focused on them because with pregnancy come other sorts of pain and discomfort.  After the pregnancy, my baby is now 1, more symptoms seem to be returning more frequently.

I have not been to a doctor since before I was pregnant and really nervous to go back.  I really want to make sure I go to the "right" doctor who will listen and make me feel I am not making this stuff up.  I also don't know when the time is right to go, do I wait and see if symptoms get worse?
I don't feel like I have anyone else to talk to so reaching out to those of you who may have gone through something similar.  
Thanks in advance for listening, feels good just to type it out although I know I missing lots of in between stuff.  Memory is not good as well :(

2 Responses
987762 tn?1331027953
Hi Lisa and welcome to the MS community,

Congratulations with your little one, though i am sorry to hear about what you've been dealing with and the stress of not knowing what is causing it all.......it's always recommended that you keep a very open mind on what it could be and not worry about any one specific condition!

IF your answer is neurological, a neurological condition like MS being the causation is still genuinely less likely than likely for the types of symptoms you've mentioned....

Unfortunately, there are hundreds of different types of medical conditions that mimic the same/similar symptoms that are associated with a neurological condition like MS because MS affects the central nervous system, so just about every symptom that's associated with MS is also associated with other conditions too.

I think the first type of dr you probably need to go to is an optometrist or ophthalmologist because the visual issues you mention may not be neurological caused. Finding out if it is or isn't will give you some diagnostic information as well as additional direction towards which types of medical conditions that are associated with it and the type of dr you'll need to see next.

You also said..."I really want to make sure I go to the "right" doctor who will listen and make me feel I am not making this stuff up. " and because of this i highly recommend you get your mental health checked out with either a psychologist or psychiatrist and before you take offence at the suggestion, please consider the benefits of knowing what your going through is not caused by a mental health issue and having the diagnostic evidence to prove it, along with a dr who will support and listen to you whilst your living in medical limbo!

I hope that helps and i am happy to chat with you anytime.......JJ  

Avatar universal
Hi, did you get any answers yet?
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