Update on neurologist appointment

[Udkas]

Hi Guys,
I had my appointment with my neurologist this week.  I have not been to him for almost two years because I do not have MS and although I have had some "MS like episodes" that feel like a new attack things have returned to my normal level afterwards.

I was concerned that I had dystonia as my GP had made this diagnosis and my hand is contracting on a regular basis causing contorting and staying contracted from a few seconds up to about 20 minutes.  My eyes also on occasions keep blinking non stop.  

Since my previous appointment with my neurologist I have had two "episodes" that have felt like I was having another attack and the rest of the time I think my symptoms have been okay, I do always have some symptoms and sometimes I get a lot of awful pain symptoms.  He said that is the TM.

For me I get migraine with aura as well and I can contribute a lot of my symptoms to migraine.  

My neurologist has diagnosed me with Transverse Myelitis.

As usual he was lovely, he listened to what I had to say and read my rather long sheet that I had for him documenting the different things that had happened to me over the time since I had seen him previously.

He said he does not think I have dystonia as apparently usually your fingers will lock into that position and you can't use them and although my hand muscle stays contracted I can use that hand when it is contracted.
He thinks that the nerves just get over excited ( he did give it a name) but I have forgotten, he said that is what is happening to my eyes as well.  He said it's nothing to worry about and can be made worse my tiredness, stress etc. but sometimes there is no real reason why it happens.

He said to me "you have scarring in your spinal cord" you are ALWAYS going to have problems, you are never not going to have problems and they are going to surface when you are tired or hot or run down.  He believes I am still stable.  He does not think I have MS or that I am likely to develop MS, well no more than the next person now, because I have gone so damn long without change.

He reckons I have typical spinal cord symptoms, he confirmed that I have lhermettes and he discussed why that occurs and he said that I have uthoffs.  He used the analogy of my spinal cord being like the electrical wiring to the house working fine all the time until you overload it and then it blows a fuse.

One of my episodes last year was about 3 weeks after our daughter's wedding, I was exhuasted, we had people come and stay so I was playing the good hostess etc., it makes sense for me to have a relapse at that time.  I described to him the most bizarre symptom I have had and was waiting for him to either laugh or tell me I was crazy and he said "that is a typical symptom of the Transverse Myelitis.  I must admit I felt relieved.

He asked me when I would like to go back to him for my next visit, I said that because things were stable I would not bother, he said to me if I am worried or think things have changed don't hesitate to go back.  

I think this is pretty much the same as what he told me the previous visit, so nothing has changed, I am stable and I don't have a movement disorder as well. Yay.

Cheers,
Udkas.

[Udkas]

I will try and answer your questions from what my neuro has told me.  TM is usually a one of episode but it can reoccur, but this is fairly rare.  It can be acute in onset and with a poor outcome, but it can also be sub acute and begin more like a MS attack and can sometimes be the beginning of MS.

I think because the damage goes all the way across the spinal cord (transverse) it causes more symptoms and can cause new ones that doesn't mean you have had a new attack, just that the msgs can't get thru to the arms or legs properly via the spinal cord, so when things short out you get temporary worsening of symptoms or some pain etc. but all can be traced back to the spinal cord.

Some of my new symptoms can be explained by migraines too, I think sadly they two things give me different symptoms just to confuse me.

As for testing I think I have had the lot done.  

Shell has started a thread about Transverse Myelitis I will try and explain on that thread for you.
Cheers,
Udkas.

[Sidesteps]

I'm with Mary on this one.

I'm not sure but I was under the impression that TM was a *one time episode* that will leave residual damage. I wouldn't expect new symptoms to pop up. I'd expect improvement over time with "flaring" of the INITIAL symptoms of the illness in times of stress, heat, fatigue, etc.

I don't know. I think I'd seek a second opinion. Why can't they do more tests?

[sllowe]

Udk!

Oh my. I continue to learn so much about this TM. hbananas has continued problems from TM as well - she's the only one off hand that I can think of that knows so much about it, and deals w/the chronic associated problems that are just like MS.

Have you ever chatted with her?

(((hugs)))
shell

[Udkas]

Thanks for your comments, I am pleased I am stable too and I am pleased about the hand not being dystonia.

I am sorry Alex that your hands cramp when you paint as I know how much a passion your painting is and wow your painting is so damn good.

Nancy, I am not sure, but they can't do anymore testing and his answer explains most things, he thinks I have had more than one attack of TM.

Oh well I am stable so that is what counts.

Cheers,
Udkas.

[beachcomber13]

Sounds like you had a good appointment. Always nice to hear about. :)

[HVAC]

Glad it went well. Your hands sound like mine. That is one reason I do not paint so well. My hands spasm and it hurts to hold a paint brush after awhile.

Alex

[Nancy T]

Hi Udkas--gosh, I KNEW there was an appt. Oct. 31--I just got mixed up on whose it was. My forgetful brain...

Well, I'm glad to hear your neuro thinks you're stable. I am still confused... doesn't transverse myelitis just occur on ONE location in the spinal cord? If you also have (or have had) Lhermitte's, isn't that in the CERVICAL spinal cord? If your TM was in a different location, can it still be TM while affecting different locations at different times?

I know your neuro is a good one and you've had lots of testing over the years, but it still seems like there's a piece missing with respect to explaining your symptoms.

Take care,

Nancy

[jibjen]

Hello,

I am glad your appt. went well and happy with your doc. And ditto on being stable.

Jibs

[jensequitur]

Well, whether or not you have transverse myelitis, the treatment is essentially the same - medication to control the damaged nerves, and plenty of rest.  I'm glad you're stable!