could do with some advise

[odthomas]

Hi, I have hypermobility and when I go to my GP with new syptoms I a normally told that it is down to my Hypermobility so was shocked to be told my new set of symptoms seems to be a neurological disorder, he did tell me the name (Ala something or other) I was still shocked that it hadn't been my pre-existing condition I didn't get the name. I have lately been getting a pain behind my eye along with a near constant headache for nearly a month (but have been so stressed ( I won't go into details) then I had a hot water running down my thigh feeling one day last week I kept checking to see in my trousers were wet but they weren't and the area was not as hot as I thought it felt. That went on all day next day nothing. now I am getting a cold feeling in the tops of both legs, patches of hot feeling in my right leg tingling in toes. two weeks ago I had the worst pain I have ever felt in my life in my right shoulder I ended up going to emergency only to be told to go and see my GP. the only way to describe the frequency of the pain is like it was building up (like labour contractions) then it was fine the next day, no pain. scared the living daylights out of me. Doctor said its nothing sinister or to be worried about and he would have a word with a neurologist and I have to go back to see him in two weeks. very confused at the moment  

[SarahL2491]

Yes, I like Kyle, once I heard I had MS, I don't think I remembered two words he said after that!  In total denial, I had him write a letter stating I had MS, which turned out to be good, because I needed it to get the free cooling jacket, walker and cane from the MS society.

So when I have my "denial" periods, I get my letter out and read it again……..and then reality sets back in!  LOL

[kwarendorf]

" I was still shocked that it hadn't been my pre-existing condition I didn't get the name."

This has happened to many of us. Once the Neuro said I had MS all I heard was "Blah blah blah...", I was fortunate to have my girlfriend with me. She was able to fill me in later :-) An extra set of ears can be a big help!

Kyle

[karryon55]

Hi there & welcome to the MS forum. I need to inform you that there are not any doctors on this forum rather people living with MS or are in the diagnostic process aka limboland. Based on this please always check with your doctor on medical matters.

If I was in your situation I would just ask for a referral & go to see a  neurologist yourself rather than rely on your doc just "speaking" to a Neuro. There are lots of mimics of MS so you will need to have a lot of testing to find the cause of your symptoms. For example, One mimic of MS is APS which involves having 3 blood tests to see if you have any of the markers.

Some of the other mimics are things like migraines, peripheral neuropathy, diabetes etc. Basically a dx of MS is made after other possible causes have been excluded. This can take a long time & sometimes a neurologist likes to watch you over a period of time.

In the time you are waiting to see a neurologist I would record your symptoms with the date & duration of that symptom. Try not to worry in the meantime because stress can make neurological symptoms worse. As you have a type of hypermobility much of this could be coming from damage to the joints especially if you have had it for a while.

Good luck & keep us updated.

Karry.

[HVAC]

I would see a Neurologist and get things in writing.

Alex