The Struggle continues

[Eagle6205]

Ok so I'm updating starting a new thread.  After all these tests MRIs 3 Neuros and A brain Surgeon and an MS specialist.  I was going to have a muscle conductivity test performed due to decreased sensation in my left side. Well I ended up in the hospital again this time was admitted. I had another severe Stroke like symptom attack and they ran me off for a CT.

Did all the normal Neuro evaluation tests with follow the finger,touch the finger the touch the nose,raise your leg run your leg down the inside of the other ect. Then they made me read a placard and look at pictures to see if anything was amiss. They were gonna give me the clotbuster for stroke but after I told them about this being one of many attacks they told me they had to decide on rather or not to give me the clotbuster due to the fact that if I weren't having a stroke I would have hemorrhaged and bled from my brain. After a call to the On call neuro and further Eval they didnt give me the clotbuster. Had they Id be dead.

So they loaded me up on intravenous benedryll for the headache and dimmed the light for me to sleep while I waited for transfer to the hospital my on call neuro was at. When I got there they did all the same Neuro eval tests and then I slept for a few minutes on and off till I got my room, They gave me morphine for my pain in my legs and arms and head. The following morning I had another MRI on my brain and was supposed to have a Angiogram of the carotid artery but due to the dy effects adding up from both it was postponed.

So two days ago I had the MR CTA of the Carotid Artery and I got the call this morning tumor size hasn't changed and MR CTA Angiogram on Carotid artery and brain were normal. -__-  Im so Frustrated. All these tests are coming back normal and I have no Answers. I keep having these attacks and I was about to go back to school again but I know if I have an another attack at school ill be dropped again. Since the last attack my symptoms with walking got severe again for a few days but are going back to me being able to walk at least. Anyways thats the update. I have the muscle conductivity test coming up on the left side on the 25th. Bet that will be normal too even though I a pin prick on the right hurts but on the left it feels like a qtip. Sigh...-__-  Life Goes on back to my Guitar :)

[Eagle6205]

Well Im back with an update.

EMG was negative. I had another test ran before I left as a last ditch effort by my specialist for HIV since it can apparently cause these symptoms. They never called with the results so I waited 3 weeks and called them.

It was negative too which I knew it would be, She went over all my test results with me and said at this point she would stop pursuing it due to her limit of tests and would try to get me over to the university. Well that worked out too. They put in for the Referral just never got an answer I found out so I called and they got me scheduled February 16th but told me to keep calling back to get in earlier if a cancellation occurred.

Ive been falling on a daily basis now, my legs just suddenly go weak and wont hold me. When I try to get up they aren't strong enough and I lay sometimes for 10minutes due to the strange fatigue I get after a fall. after about 5-10 minutes my strength comes back in my body and my legs and I can stand. I dont like going anywhere by car anymore since it hurts so bad and when I get out I stand for all but a few minutes and I begin to slowly start to lose balance due to the weakness in my legs. Ive noticed the more I get up from sitting the harder it gets to get up, and intensity of the pain increases. Especially late of the evening.


Next stop the University and hopefully they can get to the bottom of it.

[LisaJF]

Eagle:

I hope you find answers soon. We all know how frustrating it can be not to have a definitive answer to what ails us and waiting in limbo for months or even years.

Hang in there and keep us in the know.

Lisa

[Eagle6205]

Thanks yes I found out by asking for a copy of my last MRI ,they are calling it a brain tumor now. However...they still dont think its the cause of my symptoms. My MS specialist hasnt dismissed me yet. She is waiting on the test results of my EMG I had performed last week. I should know in two weeks but she has already told me she is going to try and get me into the university here if this comes back negative. I'm still at a loss for answers. Who knows anymore. I think the only tests left to do would be a Lumbar Puncture. But I dont know. She told me shes looking for 3 things MS, stroke or one other which I dont recall.  Its so strange how it hurts so bad I can hardly walk and then the pain eases up for a day or so and then goes right back to gritting my teeth.  though it eases it never goes away. And it seems to be going up into my hips and lower back now. Ill post back when I get the results. I presume my left side will show something.

Thanks.

[supermum_ms]

Forgive me but i've become confused........

I genuinely was under the impression, that you still really believed these recurring seizure or stroke like episodes where being caused by the Pineal Gland Cyst (discovered some time 'after' these episodes had started earlier this year) and in your search for concrete answers, you've seen an MS specialist who's explained why your situation is unlike MS.

"I trust her expertise and I believe she is trying to help. She told me she didnt  think it was stroke.Because it affected both sides ..........She said she doesnt think its MS as MS is very specific to its traits but she would try to do any tests which havent been done to help come to a diagnosis."

After reading your update I was left wondering... if the MS specialising neuro who's still testing for answers, was actually involved with this episode and tests or if this was a completely unconnected emergency medical team. Who ever it was, what i think your saying is because your brain MRI was normal, apart from the Pineal Gland Cyst (is this the tumour?), they still weren't able to identify what's causing it and your again feeling dismissed as a result of being no closer to the knowing.....

I can understand your frustration but try looking at the lack of abnormal test results, as closing the gap and shortening the list of your possible answers, and by having hard evidence that rules out the expected, that in turn is getting you closer. There maybe the potentially that the continual lack of evidence of an alternative to the Pineal Gland Cyst, will eventuate in being assessed by someone who actually specialises in that condition, if you haven't already or it's dismissed automatically, I think i would probably consider getting a specialist opinion anyway.

"So is a relapse like that? where you have severe symptoms of something like stroke? Im just curious so I can get an idea of what to kinda expect."

Each person has their own set of clinical signs and sx's, and corroborating test results, along with a historical pattern of relapsing and remitting sx's consistent to RRMS, and considering your MS specialist opinion of what's happening to you is actually not consistent with MS, it would probably be more helpful, if you expect things to be the same (or similar) to what you've already experienced during prior episodes.

Cheers..............JJ  

[Eagle6205]

You know we pay all this money, They run test after test and they all come back clear and what I dont understand is out of all these tests there must at least be some indicator that shows something or at least can point to something at the very least prove your in pain.

I just dont understand the more I think about it the more I feel helpless and at the hands of people looking at the tests who may be dismissing signs just due to my age. They always say your too young for this or that and rule it out before even looking at the facts. So very Frustrating.  So is a relapse like that? where you have severe symptoms of something like stroke? Im just curious so I can get an idea of what to kinda expect.

[aspen2]

So sorry ... and I hear you. Still waiting for my neuro to communicate with me after my last extended relapse and many ER visits (and he was on call for the last).

So frustrating.

[HVAC]

I hope they give you an answer it is frustrating.

Alex