Hello to everyone!
I am new here and have lots of questions and venting and I will apologize now if I ramble.
Two years ago I was diagnosed with partial transverse myelitis. I had an MRI with and without contrast and a lesion was discovered in my thoracic spine. Numbness and tingling down the right side of me beginning underneath my right breast down my leg to foot. Drop foot also on my right side. My leg felt extremely heavy and hard to move. Also numbness and tingling behind my right shoulder blade.
This happened suddenly. I went to sleep one night and woke up one morning with no feeling. I waited 8 months before I visited a doctor because I thought that I had a pinched nerve. About 6 years prior to that I had a similar experience, can't remember if it was on the left side or right side but I thought it was my sciatic nerve acting up and I did not go to a doctor for confirmation. It too happened suddenly. It eventually went away months later.
Eventually I did go to a doctor for a different reason and casually mentioned what was happening to me and immediately I was referred to a neuro. Well...I had to wait another 8 months to see neuro. Neuro suspected TM for sure due to the symptoms and areas of numbness but after taking a medical history suspected MS.
As I said I had an MRI and one bright spot was found on my brain (tiny) and a demylenating lesion on my spine. (I think just one) TM confirmed but have been clinically monitored for MS since. Also have been diagnosed with degenerative disc disease in C-spine.
Approx 6 months ago began having deep stabbing pains, extreme burning sensations on the right side of me as well as fatigue. On the back of my neck it felt like someone was splashing hot butter or oil down my spine. Neuro suspected a 2nd flare up and as a result was referred to an MS Specialist and had a second MRI of brain and spine...no contrast this time. Saw MS specialist and good news...no change in MRi in past two years. No new lesions on brain or spine. MS specialist began to question whether I have MS or not. My other Neuro said it was a classic RRMS case. She is a movement disorder specialist and also deals with ALS and MS patients. All symptoms are sensory. The MS doc said that active lesions will cause the same symptoms of stabbing and burning pain that I have been having for the past 6 or 7 months and felt that DMD's were not indicated at this time.
I asked the MS doc point blank...So you are saying that I do not have MS? He would not answer me and said if I remember correctly what does it matter whether I do or don't have it? I stopped asking him questions at that point. He offered to be my new neuro and I told him that I would just continue visiting my original. Maybe that was a stupid decision but I like her bedside manners and feel more comfortable expressing myself to her.
What I would have liked to have said to the MS specialist is, it is important for me to know because I do not want to walk out of this office thinking that I am in the clear only to find years later that I do have MS and could have been taking something to help prevent relapses.
So I have one neuro, a specialist that says it is questionable and I have one neuro that believes that I have RRMS. I will continue to be monitored and so that is a good thing, I guess.
This is my problem. I have been having one heck of a hard summer. The heat has really affected me and my numbness and tingling on the right side of me has once again increased as well as extreme fatigue. I have had to cut my hours at work as a result. The heat seems to bring this on. The good thing is I do not have stabbing and burning pain, it just simple disappeared. Oh sure get the odd nerve pain but nothing compared to before.
How long does it take for a lesion to heal? It has been two years and I have permanent sensory impairments and still walk funny. Does an old lesion cause new symptoms like the stabbing and burning pain that I was having. Also, I had intense itching with no apparant rash, for months...now has disappeared.
I have had intermittent numbness and tingling on the right side of my face, forhead, cheekbone and stabbing nerve pain in my tongue. Now seems to have disappeared. Is it possible to have these new symptoms without any new lesion activity showing on an MRI?
I am sorry I am blurting this all out to everyone here however, I did not feel comfortable asking these questions to the MS doc.
One more thing and I am embarassed to say this but I did not realize until just recently that my sexual libido has been affected. I guess because I have had no feeling. Some feeling has now come back..thats all I will say
My husband has noticed that I seem to have lots of cognitive issues...I have been fully aware but I guess in denial and could not believe that he noticed. I guess that I am not a good actress. Also, I have a co-worker (who is unaware of my neuro issues) that has noticed that I have difficulty saying what I want to say and memory issues. Is this possible with no lesions on my brain?
I have not mentioned these issues to my doctor because I am afraid of being labelled a hypochondriac. I think that is why I wait so long before I visit doctors. I once had a broken foot for almost a year and by the time I had it looked at it was too late to do anything. You would think that I would learn
Anyways, I really am sorry for going on and on....thankyou for listening and I do value what any of you have to say
SS

Hi S&S,

I'm not a neurologist . . . but YOU HAVE MS.

(I have never said that to anyone in limbo, in all my years on the forums, so that's how strongly I feel about this).

Two (mild) TM attacks, a lesion on the spine, a lesion on the brain, no contrast in the last MRI (so any new lesions wouldn't enhance/show anyway), all those symptoms . . .

If you are in BC, I can recommend you to a good neuro.

Cherie

Hi Cherie
Actually, yes I do live in BC and I would be grateful if I could find a good neuro and I would be willing to travel the distance if it meant having some concrete answers!
I thank you so much for responding to my post
Sincerely,
SS

Hi SS and welcome to the forum, I too believe you have MS, it does sound like a classic case of RRMS, I have been going through a bout of TM at the moment that is much worse than you describe so the only advise I can give you is to think what I have been thinking, it could always be worse. That is what keeps me going through all this..

I do hope you can get on some MS drug to slow progression, your one neuro sounds like he has it right, the other one is possibly waiting till something dabilitating happens because he is afraid to "label" you MS, it is very hard to diagnose sometimes but it DOES sound too much like you DO have it and need therapy...

Good luck to ya SS, I hope you can get some much needed therapy.

Joe

Hi Joe,
Nice to meet you and I am sorry that you have been having such a hard of it I am so wanting some answers right now and just am feeling a bit exasperated I guess. You are right, It could be worse, and there is someone who is always feeling worse then I am and so I am thankful for the health that I have.
I will keep everyone updated as it happens. Thank you for your show of support, just really amazes me this forum thing
Sincerely,
SS

welcome sugar.


the people here will give good advice so I am gonna stay out of that circle. They have a way with words that are so comforting.

My question was why did they do that MRI without contrast? That is like the holy grail stuff. while they have you there, boom a touch of dye and we can see active disease. I have seen several neuros do MRI without dye, and I just dont get the logic.

I hope you feel better, and get some stability under you soon.

Hi Sugar & Spice and Welcome to the group! Nice to meet ya! There are many friendly, knowledgable fellow MSers here, so feel free to ask questions and vent away!!! I hope you get some answers soon and start to feel better as well.

First let me say Welcome Sugar and Spice. It sure sounds like you've had a rough summer too. Many of us here are having a worse time then usual, so you are not alone.

This is one MonSter that comes and goes in many forms even in the same person. I can relate to many of your sx.

As for answers, I have none that come to mind right now. I'm sure someone(s) will be along and help you out better.

I just offer my empathy and wish that you are soon feeling better.

's

Hi Beth
Thank you so much for welcoming me here, I feel better already just knowing that I am am being heard. I wish you and everyone else here the best as well!
Sincerely,
SS

I'll send you a private message. Look to the top right of the screen to access your pm's.

Cherie