Looking for answers - Multiple Sclerosis Message Board

Michelle9311 · 06-28-2002, 09:14 AM

Hi everyone, I am new to this board and am looking for some answers to alot of confusing things. I am 35, female with four children. My s/s started after I had twins 4yrs ago. Started with vision problems and N/T in my arms and hands to the point I was dropping things all the time and would feel off balance. I thought I have twins and am exhausted so of course I feel strange. I should mention it was a very difficult pregnancy, had all the complications and was in bed for 3mths. Anyways the vision kept getting worse and I went to eye Dr and was told I had bi-lat cataracts out of the blue. Last eye exam yr before no cataracts. Anyways then the hyperthryoid stuff started thought I was crazy for a while till they ran those tests. I have remained hyperthyroid for 2yrs now with no treatment. They tried 6wk of PTU which actually, made my TSH lower. Then a scan that was normal at that time. Since then the numbness has gotten worse in the arms and I have patches of it in legs as well. Sometimes my feet are mottly and I cant even feel water on them in the shower. I have had MRI with 3 white matter lesions noted. My EMG's were abnormal but not significant. I have repeated the thyroid scan and now have cold nodule as well. They recently did myotonic dystrophy test as this has all the s/s I have as well and it is normal. My neuro said she cant rule out MS but will have to repeat all tests in a couple of months as it has been 6mths now since last MRI. I am really getting tired of all this and just want to know what I am dealing with. I would appreciate it if anyone can tell me if they have seen this stuff with MS or are they shooting in the dark? I would also say that it seems to be the cataracts that are throwing them off as well as thyroid, but yet no tx for the thyroid stuff. Help.

bmwarner · 07-01-2002, 10:32 AM

You need another doctor! What is happening to you is exactly what happened to me after I gave birth. It started with my vision...I had problems before with my contacts giving me an eye infection and making it hard for me to see so I went to the optomotrist thinking that was the problem again. Little did I know it was Optic Neuritis and the eye doc sent me straight to a neurologist (1st neuro). He was positive I had MS but the tests wouldn't prove it even though I kept have more and more symptoms so he told me to wait 6 months and come back when I protested, he said I was stressed. I went to another doctor (completely unrelated) and started crying and telling him about the problems. He asked me if I was happy with my neurologist and I said, NO. He referred me to another neurologist who immediatly re-ran my MRI which had in the matter of 3 months changed from no lesions to 3 lesions including the one on the chiasm (where the 2 nerves from your eyeballs cross) of my optic nerve. By this time I had violent tremors, I couldn't feel temperature, I was exausted all the time (to the point that I couldn't get out of bed, literally) and all of this was happening while I had a new baby at home. My second doctor gave me the diagnosis and started me on Copaxone (everyday injection) to lessen my symptoms. I am doing great now and so far (6 months later) have had no recurrences. Praise God.

Michelle9311 · 07-01-2002, 01:16 PM

Thanks BMWarmer, I'm sorry that you have this but I am also happy to hear rom someone who also has been throught the same stuff and no answers. I would be interested to know what criteria are they basing your diagnosis on? Have any of the other tests turned up abnormal? Yet? I am also a nurse and have found this to be a true picture of what goes on behind the scenes. I know to much and ask the right or wrong questions and then the Dr's say they cant say one way or another till you fulfill some type of laundry list. What a crock. Its no wonder that we have to stand up as individuals and say make a decision. The other thing that I have an issue with is when they cant tell you a diagnosis it ends up beig stress or depressed. I am pretty stressed but not depressed. I just want to know what is wrong so I know how to deal with it. Thanks again.