8754215 tn?1399834273

Update on some questions I posed a few years ago. Now with Answers! :)

A couple years ago I came here seeking answers to a plethora of Neurological Symptoms I was facing that I wondered if it was MS.  Let this post be a Testimony to how someone can go through all the symptoms I had
go to a whole Battalion of Drs and various specialists and still not have an answer till years later.

To date as of my last post here I was talking about going to the University on February 16th. That was years ago.
If I am correct it was dated 2014 Well I got some answers and I kept searching I got more answers. I kept Searching and found out some of the new answers were from the old answers.

I had what I personally still believe was a stroke. Had severe trouble with walking and speech cognition reading ect.
well todate I can not walk without a cane because I lose my balance and fall. I was sent to physical therapy and told
it was too late and unfortunately they waited too long after I went for about 14 sessions and saw no improvement.
He was honest with me from the get go it looked as though I had indeed had a stroke and my other leg was trying to compensate for the weakness which in turn weakened it as well. The First Diagnosis was Sporadic Hemiplegic migraine. by a Specialist at the university. It is a rare condition affecting 1 in 10,000 people.  I now have to take daily magnesium supplements to prevent stroke symptom onset and recurrence of 8 scale in pain.

Then due to weakness and not getting any better he sent me to a rheumatologist I got Diagnosed with
Psoriatic Arthritis and Lupus. Lupus was the main culprit and did alot of damage to my nervous system.
yes even after I had been tested for Lupus and told I didn't have it by my MS specialist it finally rared its ugly head in my blood tests. After reading up about Lupus causing stroke Symptoms I wonder if that had something to do with it, but either way magnesium helps my pain in my legs alot doesnt stop it but eases it. I never was prescribed any pain meds by any Drs. but once by a Nurse and I didnt bother with it after years of not having any. Tramadol is all she could prescribe knowing many people have a hard time stopping it and opted not to take it.

I followed up with a world Renown Neurosurgeon on my brain cyst they called a pineal cyst than later called a Tumor. Theres nothing he can do but it is a tumor not a cyst. Pineal Cysts he said do not typically grow he knows he removes them and has been banned from doing surgeries in some hospitals because he has removed taboo tumors that they say are never to be removed or the patient would die and he did so successfully. He studied under world renowned Neurosurgeon Dr. Teo. So when I thought it was all over I wasn't convinced about my legs. I asked my nurse to see if she could send me to see an another Neuro for a fresh slate on what my legs could be caused by. Well I was sent to one. He first told me Guillian Barre. I was sent for an EMG again! and this time it was negative too BUT he told me that I could have a nerve condition affecting the small nerve fibers and not the large which is what the EMG checks for, it cant see the small fiber damage.

So I told my new Neuro that and he said OK we can test for that its pretty rare but we will give it a shot.
WELL.... So I went in for a skin biopsy and they sent it to the wrong lab... -__-
So they waited a few weeks to tell me... I had to go back in AGAIN and have it done yet again...
They sent it off and a few weeks later I got the results back. I tested positive for small fiber Nueropathy.
So add that to the building list of rare conditions as well. All those symptoms I had I didn't need to see a shrink or Psychiatrist for... I was't lying let the record show.

Sometimes when a person seems like they might be crazy or exaggerating...Well they are really telling the truth.
I have all those and the whole time they were looking for one thing when it was more like 5.
All those MRIs CTs bloodtests Drs Appts. Guesses and they were all clean now I know the truth.
Systemic Lupus though, of all of them is tearing me up. It was affecting my kidneys.

1 Responses
987762 tn?1331027953
Hi, long time no see, thank you for coming back to update the community!

I never really know what to say when someone finally finds their answer or in your situation answers, on the one hand i'm pleased for you because you are no longer stuck in medical limbo but on the other, well it just sucks to be honest to hear you've been diagnosed with not 1 but at least 3 medical conditions, 4 if you count the brain cyst-tumour, that truly isn't fair!

In a lot of ways Lupus is one of the closer MS mimics, small fiber Nueropathy can cause similar issues to the nervous system too and with Sporadic Hemiplegic migraine symptoms happening on top of everything else, it's no wonder the road you had to travel before being dx was harder than it usually is, overlapping conditions makes dx's all the more complicated with all the symptoms you were dealing with confusing the diagnostic picture...

Diagnosis is not the end it's only the beginning, so i wish you all the luck and inner strength for this next chapter of your life.....JJ
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