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anyone with a TM diagnosis ???

HI everyone

I havent been on here for a long time, last year I woke up one morning with, muscle weakness, numb fingers, fatiuge all the usual suspects, after a couple of MRI’s 2 doctors 1 MS nurse & 1 Neuro all told me to prepare for PPMS, then last Nov my neuro said it was TM, no explanation but thats what it was.

12 months on I am still having symptoms every second of the day and I am still diagnosed with TM, however I am having a eye evocked thingy next week and a lumber puncture a couple of weeks after to determine if it is MS or not.

But from reading up on TM it is meant to be a rare condition 500 people in the UK diagnosed a year, however I lknow of someone else in my NHS trust who has gone through the exact same thing and I wondered if anyone else was in a similar position???

thanks

Ruth

Hi there Ruth,

Your situation sounds similiar to mine. Apart from slight numbness in 2005 and a clear MRI scan then.

I woke up one morning in November 2008 with numbness weakness and exhaustion etc. It lasted 8 weeks or so and my GP just thought it was a vius. The l’hermiites sensation lasted a bit longer but I was fine otherwise. Any in October 2009 spasticity started to appear in my right calf and this has got steadily worse and has therefore effected my walking and balance etc.

I has an MRI which showed a lesion on my spinal cord. My neuro said I had developed radiation myelopathy from treatment I had in 1990. Yet another neuro said that I had an attack of Transverse Myelitis (Nov 2008) but although I seemed to recover quite well there was some permanent damage which has resulted in the development of spasticity. Apparently, spasticity takes time to show it’s full extent.

I had a LP which was negative for the bands which are seem in 95% of people with MS. I actually thought I had PPMS because my walking has got gradually worse. I have been told PPMS is unlikely due to:

negative LP, not enough MRI evidence, Symptoms triggered by an attack. progressive Walking problems due to spasticity which could be linked to that one attack.

Hope this helps

Moyna xxx

Hi, I was diagnosed with tm 2 and a half years ago. Had a virus and completely lost the use right hand and wrist and my speech went funny. Has MRI has two lesions, evoked potentials were off but lumber puncture was negative. Was told I may never develop ms & just get on with life. No treatment etc, so I’m a wait and see care. Tm is very rare and I understand that if it isn’t true tm the other thing it would turn out to be is ms.

Thanks guys

App666 has the usage of your right hand and wrist come back now?

Monya - I totally understand the one attack problems, thats what they keep saying mine is a result of, although I am sure have had a one more in the past 12 months

I do have a feeling that my lp & evoked thingy will come back negative and I will be in limbo land, but I dont think TM is as rare as they make out I know 2 people in my circle of friends who have been diagnosed with it

Ruth x

Yes I’ve completely got the use of my hand fingers and wrist again and that was from no movement at all. All I could do was think about moving any part of it but it just wouldn’t move. Had complete feeling in it but not even a tiny bit of movement until the inflammation had gone down on my brain. I didn’t have any steroids either it repaired itself. My hand writing isn’t as good as what it was but that’s it. Full strength and movement back.

Hi app666. I was to diagnosed with TM last July and told possible Progressive MS. I have now had the evoke thing which showed a delayed response which I was told due to the lesion on the cervical spin. I have also had the lumbar puncture which also came back positive for the O bands. I am now back for further MRI next week to see if there has been any progression. Unfortunately I have had no improvement and my walking and strength in my legs has got slowly worse. My neuro wants to diagnose me but I need one further lesion to make the diagnoses. My original MRI showed one lesion on the c2 area and a possible on c5. So although I don’t want the diagnoses I do so I can just get on with it and have access the support etc. the waiting is a nightmare and you just want to know so you can plan and get on with it TM is rare and I hopefully you will just have the one attack and recover. I have done quite a bit of reading so feel free to chuck a few questions which I can base on my personal circumstances. Wish you all the best for your test fully understand what your going through. Jason