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