Update on latest neurologist's Visit

[Udkas]

Hi Guys,
Today I went back to my neurologist for my routine checkup.  As usual he answered all my questions, listened in detail to all my symptoms and goings on, did my neuro exam.  I have a lovely neuro, who is kind, always has a smile and doesn't mind taking time out to explain things.

This is what he had to say.  My neuro exam is unchanged from previous visits. Shows abnormalities consistent with spinal cord.  My diagnosis is still Transverse Myelitis.

He does not think all my symptoms are migraine, he said definitely not, yes I do get migraines but I was trying to blame them for things that is caused by the Transverse Myelitis.  He said my varying symptoms and even the new ones are just from the TM and this is the way it behaves, it does not mean things have got worse.  His way of explaining it to me was that my electrical wire from my brain traveling down through my spinal cord gets blocked and then short circuits everything, causing my episodes of numbness, burning, pins and needles, weakness etc. He said then I am like a circuit board with faulty wiring and messages get sent to the wrong areas causing my problems (something like that), he said it does not mean things have got worse, my messages are just getting scrambled on the way down... the spinal cord.

He said the episode where my left side went numb in the pool and I couldn't lift my arm to brush my hair etc. was my TM, not migraine not stroke, just uhthoff's phenomenon.  He said our pool was too hot and being a hot day and doing laps etc. I got my body too hot and just temporarily made my symptoms worse.  It did only last 5/10 minutes but it terrified me.  He said I will always get problems in the heat.  I asked why now am I having so many problems but he said TM can be like that.

He doubts if I will have another attack of TM but he said that sometimes TM can turn to MS or be the start of MS but because my brain MRI have been normal and I have had a lot of brain MRI over an extended period of time he doubts if I would develop MS.

He recommends swine flu vaccines for all his MS patients and told me to get it. He told me that I am not crazy, that my problems are not anxiety, stress etc. that they are real, he said there is no way migraine would cause all that I have going on, it's the TM not the migraines!  He has booked me in to see him in 6mths time and if I feel good I can cancel, I think this is to reassure me as sometimes what goes on scares me.

Sorry this was so long, I guess for people in limbo or with TM etc. this might be interesting to read, I thought when I had a new symptom in a different place it was a new attack, not my spinal cord sending messages haywire.

So that's my update.

Cheers,
Udkas,

[Valerie64]

so pleased to hear you're not in Limboland any longer - take good care

Val x

[hbananas]

Well put, Udkas.  I'm glad you aren't having new lesions and are still "just" TM.

And guys, those of us DX with TM are going to stick around because
#1  It's home
#2  The diagnoses are next of kin
#3  Partial TM acts more like MS than it does "classical" complete TM, which is where most groups and resources about TM focus

Then there's that Quix threat about crocheting a velcro suit or something.

[PastorDan]

Happy to hear you're not progressing, and that your questions are being answered, fears allayed, etc.   Your neuro wouldn't be planning a holiday over this way, would he?

[Udkas]

To Shell:

I always feel comfortable after an appointment, I always leave my appointment with a sense of relief and happiness because I have had all my questions answered, and have a better understanding of what is going on.  I don't feel confused anymore, when I had symptoms that appeared to be new I tried to work out if they were MS, TM, migraine etc. and now I feel I understand why I have these symptoms without progression.  Lately when I have been walking my whole foot keeps going numb but it's been hot here and I push myself physically so it is the uhthoff's phenomenon.  My neuro is a keeper and I feel lucky to have such a kind, smart doctor. I feel so much better for his reassurance and I think he is aware of that too, hence the next appointment should I need it.

To Erin and Wobbly:
My neuro has maintained right from the word go that I have TM, his diagnosis from that has never changed.  

As for meds I just take them as I require them, I take Gabapentin on and off (depending on my symptoms) and vesicare for my bladder.

I won't leave the forum as although I don't have MS and I am unlikely to progress to MS I still have many symptoms and problems that  are associated with MS, an example is the uhthoff's syndrome and when I posted about my pool incident Jensiquiter said she thought that was what it was.  Everyone has been kind to me here and sometimes it's nice to have a place to air your weird symptoms and have people understand.

For that I am truly grateful
Thanks guys,
I am not going anywhere,
Udkas.

[Wobbly]

I'm glad you found a Dr that will listen and answer your questions.. and let you know that your not crazy or that anxiety is what causing you all these symptoms.  Not  that there is something wrong with have anxiety or stress.. I know that can really do something to your body..

I'm glad you have answers... do you have meds for you symptoms and you can't leave us here .. you know that ... right?  

take care and hang in there
wobbly

[Erin0313]

  I like your neuro :) Not only did he explain and tell you that it's the TM but he explained why in a way that makes sense to us non doctors, lol.

I wouldn't call you a limbolander anymore. TM is a dx that explains all of your symptoms.

Don't even think about leaving the forum because you may never go from TM to MS! That is a good thing but you belong here with us.

Take Care
Hugs,
Erin :)

[sllowe]

Hey lady,

You feel that big exhail from me! Was with relief as I read through things this Dr. took the time to explain, i.e., the now as compared to the then, and future possibilities.

You have a keeper, one you can call on in time of need.

I sense some relief and peace in your update. You feeling comfortable after your appt.?

Cheers back girl,
Shell