What a day I had on Friday, firstly I had my scan for my gallstones, and I do have a gallstone and an infected gallbladder!
Then I had my nuro apt who without doing any pysical checks on me told me he was diagnosing Transverse Myelitis. I questioned why he no longer thought it was not MS as he and my MS nurse had said they suspected PPMS and he was very arrogant and said he is not diagnosing MS until I loose sight in one eye or the use of my limbs ! He is not a people person!
We agreed that I would have some more MRIās in the next 5-6 weeks and he would look at them and go from there.
I know I should be relived but I had come to terms with PPMS and now this, I am not good with change and not knowing what will happen x
Sounds like your neuro needs lessons for bedside manners, its not helpful when you are already stressed, but I wanted you to know that in the very beginning they told me that they thought I had transverse myelitis, but after some time that was changed to ppms. I am nit sure of the percentage what have this dx only to be changed to ms.
Its difficult for you in the respect that you were sort of coming to terms with it being ms, but hang in there, one day at a time.
Hi what are your MRI results. If you do not have brain lesions and only spinal then you might get a DX of TM. Although if your lumbar puncture had O bands then maybe it is MS. Have you had a lumbar puncture yet ?
Maybe TM is not as rare as I have read on the internet.
My first MRI showed 2 āred spotsā as my nuro said but he said that these could be there anyway if nothing else was going on which is why I pushed for a second mri as its been over 6 months from my last one.
He hasnt mentioned a lumber puncture maybe he will after the next MRI, my lovely MS nurse has said she will look at my results after it has been done. But with TM does anyone know if my symtoms would still be worse in heat. When I mentioned that I sometimes canāt say the word I want he blamed it on anxiety and said a lot of my symptoms may be because of my low mood I said I did not have a low mood, so he asked why I was stll on my anti depressants then !! x
Hi where the red spots only on your spine MRI ? Any issues with the central nervous system can cause issues with temperature ? You dont mention the results of your brain ? I cannot see why you would get dx of PPMS with only 2 red spots.
Iāve never lost sight in either eye and Iāve never lost use of a limbā¦ and I have PPMSā¦ So heās in la-la land with that one. Neuros often blame symptoms on low-mood or anxietyā¦ so ignore that. In fact donāt think about what he said at all. The MRI and lumbar puncture results will be far more informative. Hope you get the MRI soonā¦ in meantime donāt let his confusing and unsympathetic comments get you down. Pat xx
Good grief, if loss of sight and limbs are diagnosis criteria for ms then I donāt have it either and both neuroĀ“s Iāve seen are wrong. You might well have TM but a second opinion might be an idea where your possible ms diagnosis is concerned. If it is ms youāll need to be in regular contact with your Neuro and having one with good inter personal skills makes a huge difference. Mine is lovely and has made me comfortable with my dx as I know that I can see him or my nurse whenever I need to and heāll spend as long as needed with me, answering all questions. Confidence in the team makes a massive impression on your care. Good luck getting answer.
Crikey! I do know someone with TM and we spoke a few times when I was Dx.
To all intents & purposes itās pretty much the same thing, the positioning of the lesions being the only key difference really, and with that, no DMDs (which we donāt get for PPMS anyway!), certainly the lady I know has walking and bladder issues.
Ditto what eveyone else has said, get a 2nd opinion(and take lots of care of yourself), feel quite indignant on your behalf, he should not have said those things
Iām shocked at your neuroās dismissiveness and rudeness, and he seems not to understand PPMS at all well. Like several other people who have commented here, I have a clear diagnosis of PPMS but have never ālost the use of a limbā and my eyes are fine. I have a very stiff and uncooperative right leg, but I havenāt lost the use of it!
Have you had an Evoked Potential Test for your eyes? This is a good diagnostic tool for determining MS. If you havenāt, itās well worth demanding one.
In your situation I would challenge him very firmly at the next appointment, and ask him for a clear set of diagnostic criteria for both PPMS and TM, and to justify his diagnosis - and ask him what he means by ālose the use ofā.
If he carries on as before, get a second opinion, and if heās rude or dismissive or in any other way disrespectful, raise a formal complaint.
All the best with this, and let us know what happens next!
Hi, Thought I would comment on thisā¦ I was diagnosed with tm just over 2 years ago. My neuro said I do not have ms and to come back and see him if I have blurred vision in one eye or a weakness in a limb! I wonder if we have the same neuro???
In Sep 2009 i ended up in hospital and was dx with TM, i was told i would get better but to what lenght they didnt know. From then to Nov2012 i carried on getting worse and each time i saw my Neuro he would say i didnt have MS, that was fine until he sent me to another Neuro after ācatagoritly telling me that i defenatly did not have MSā only to be told in Jan 2014 by my now MS Neuro that i did infact have PPMS, as you can imagine my partner and myself was gobsmacked and a little hurt by how i was treated by my old Neuro. Saw him again Jan 8th 2014 and he wants me to have another MRI as he thinks i might have more lesions oh and i also found out that i did have a little lesion in my brain which my old Neuro said my brain was fine!
Like Skippysprite (brilliant name btw) i too get blurred vision and also zigzag flashing but not lost sight completely.
The only difference to me with this dx is that i dont seem to be left to get on with it by myself, with TM there wasnt any nurses to talk to like the MS nurses infact my old Neuro said right at the beginning that they had MS nurses but they would be no good for me as TM was a different illness.
Lisa youāre so right, I was initially told I had a spinal cord injury, not ms. I had no help at all though I obviously had the same symptoms, but once I got my dx of ms I suddenly had nurse and OT referrals, home visits and all the help available to keep me safe at home. Thereās something wrong with the system. Glad you got to the bottom of your problems.
Thank you for all your kind comments i havent been on here since i posted as i feel a bit of a fraud and a hypocondiacte as my diagnosis isnt ppms i have another mri next week and my ms nurse is going to look at the results and we will discuss changing my neuro
She still believes this will turn into ppms and i dont know im still in limbo land regretting telling everyone that the diagnosis was going to be ppms x
Please dont feel like a fraud, TM or MS you still have a debilitating illness to cope with, and I am sure everyone will agree with me, that you are most welcome on the forum, so please dont stop posting.
We all try to help one another and give advice and support, and you are in need of that, so I look forward to seeing you postā¦
Hi Ruthy, as Pam says, of course you are welcome on here! You are more than welcome whichever it turns out to beā¦ and we all remember what limbo was like! Keep posting! We would miss you if you left us. Pat xx
I agree, donāt feel like a fraud Ruth, those of us that even have half a clue about TM know youād be splitting hairs to say itās completely different, it is SO similar! I said it before so Iāll say it again [quote=ānindancerā] To all intents & purposes itās pretty much the same thing, the positioning of the lesions being the only key difference really, and with that, no DMDs (which we donāt get for PPMS anyway!), certainly the lady I know has walking and bladder issues.
Thank you so much its nice to know im welcome. Im totally confused with whats going on, but your right sonia i descibe tm as the same of ms without 9 brain lesions! I have another mri on friday then a meeting with my ms nurse the week after oh & my gallbladder op in march im just hoping to come out of limbo land ā¦
Ruth you are definitely not a hypochondriac or a fraud. Iām sure we all feel like that sometimes and the next day when we hurt or fatigue kicks in we know that isnāt the case. Weāre all in the same boat with regards to symptoms and having someone who understands to talk to us really important, I know it is for me. Having also been in limbo for years, getting my dx last year I can relate to what youāre going through. Please donāt feel you donāt belong in the group, as the others have said, youāre welcome.
