Lisa, this is way beyond my ability to comment medically, but I do want to let you know how sorry I am. You must have been terrified.
ess
Holy Crap, woman!
I have no clue what caused this. But, pray it doesn't happen again. I'm glad bf went and called and got you care. You best be staying in and resting, or I'm gonna be hunting you down.
When do you go to the reg. neuro?
(((Hugs)))
shell
I went to the regular Neuro. He says "possibe MS" not "probable". He doesnt feel that my symptoms are bad enough to start me on capoxone or is thoroughly convinced that it is MS. He says my movements are chorea of type. I could barely stand without falling into the patient's bed thing or chair or wall. I couldnt do the heel or toe walk, I couldn't do the heel down shin, I had ankle clonus, I had truncal titubation with right arm tremor. I got lost with GPS to his office and Ive been there a zillion times years ago. I am confused the past few days and I'm blaming it on the Decadron. I am also not hungry at all and haven't eaten anything in two days save for a half of a banana. Im taking supplements right now to make up for the anorexia. The decadron is also giving me an euphoric feeling, energy like you wouldnt believe (can you believe that? No fatigue?) I'm up at 2 am in the morning (never had this in the 14 months). Im sure it will stop as soon as Im done with the decadron. Too bad provigil doesn't have that effect on me.
He told me that the provigil is probably worsening the movement disorder. I said, "Really? This is relatively calm compared to what I normally have and that is before I started the provigil.
So all in all, I was upset with this visit in hopes he would have a clue as to what is going on with me. He also told me that the lesions are not in my corpus collosum. That I have supratentorial lesions that are not typical of MS.
He said you have to have lesions to match up with the symptoms.
I think I have to move forward onto another MS Specialist that is involved with a clinic. Either that or if you all have any advice what I should do, I'll seriously consider it.
Lisa
I am blown away by this shocking downturn of events. HE only gives you what you can handle and I reckon you must be one tough cookie because you got it all happening you poor thing. I do feel for you and am amazed at your lucid description of everything.
My only comment would be about the Neuro saying that lesions have to match up to symptoms and that your lesions weren't typical of MS. Well, at my worst I was stuttering and tremoring yet my only brain lesion was in my right temporal lobe which is apparently 'unusual' for MS and shouldn't have caused these symptoms so the neuro said. Well, I say phooey to the neuro on this. We don't know the cause of MS and certainly don't know the cure so how can the neuro be so sure? Something is causing your symptoms and I just don't get why they want to keep you in limbo land.
We all seem to have MS and something else and I imagine you would be so relieved to finally have just one diagnosis to explain some of these weird symptoms. I find it funny that these nerdy neuros study people like us for years and yet they can't have any idea of what it actually feels like to have the symptoms unless experienced first hand. If only they could walk in our shoes for a day or even just an hour.
Keep up the fight, you're doing great.
Blessings
Alex
OMG he said you have to have lesions to match up with the symptoms! Many lesions are "symptomless." In what context did he say this?
-shell
At this time, I feel there's not "fight" in me left. I'm going with the thought that I should just leave it alone and sooner or later this "whatever I have" will reveal its ugly head to the point where they are forced to come to a diagnosis. (Honestly, I don't see too many things left).
I am hoping that it won't be in an end result that requires me being in a wheelchair unable to walk or some other form of permanent disability (which for 14 months I've been progressively getting worse to the point where I'm not market material for a job even at McDonalds).
I have a lot going on right now too (with a family member that is terminally sick) which is not helping.
@Shelly: He said that you need lesions for a diagnosis for MS. That they have to match up symptoms with the lesions. Because I told him that for some medical facilities, they have diagnosed MS without lesions with CIS events and he said he didnt know where I got my information from but that's not true. He's probably right? I don't know.
All I do know is that "this fight to try and get some medical professional to commit to a diagnosis (of any kind at this point), is fruitless.
I did say to him, "If this was you, taken out of your work, debilitated to the point where you can barely do your activities of daily living, unable to function like you used to, you would want answers too after all this time, diagnostic tests, surgeries (TEE for PFO and vaginal mesh for urinary incontinence that didnt work).
I just left disgusted.
Lisa
I don't know if this will make you feel any better but the ms specialist wrote in his note that if I had spinal lesions he would overwhelmingly think it was ms.
No spinal lesion. No diagnosis. I am going to send you my strongest good vibes today.
I haven't been around ing but I know that you are the most caring, supportive person I have met on this forum.
I am cut from the "there's a reason for everything" cloth.
If you weren't going through all of this cr@p, we may not have you to uplift us, give us your strength and words of true wisdom. That may sound selfish on my part but I want you to know that you are valued no matter how bad your body is treating you.
The only thing that makes my body feel better is being in water.
I told my husband that i wish I was a mermaid. Then i wouldn't have to worry about legs.
Good luck. I am sending you my love! Can you feel it?
Kerri
Please look at vitamindwiki . Its a light at the end of a tunnel for people like us.
I have on reflection had neurological symptoms since childhood but was only vaguely diagnosed with possible m.s in 2001.
I chose not to get involved with the medical profession after being treated a bit like you lisa. Best thing i could have done it turns out. At that point i was using a wheel chair. However through a variety of ways i achieved z state of welbeing that i have maintained. This year i had a very acute relapse. I understand what brought this on. Hugh amounts of external stress that i was not in a position to change, including a traumatic house breakkin.
The breathing thing is very scary and a new one for me but thank god for youtube. Great advice thats easily applied. My manifestation is my brain interpretes everything as pain and goes into spasm and then lock down. So clothes too tight become agonising, feet of floor agony, bedcovers on legs excruciating. Salava in throat drowning.so choking at night. The medical term for that is larangospasm. Check it out see if it fits with your experience
Leza
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