May finally be getting a diagnosis - Multiple Sclerosis Message Board

Pearlscale · 04-24-2007, 10:35 PM

Symptoms started 17 yrs ago. Began as pins and needles numbness in face and lt arm. Off and on for many years. Received a diagnoses of FM. Then about 2001 began having double vision. Would last for just minutes. Then headaches, almost every symptom listed for MS at one time or the other.

Most recent "attact" which was #4 since 2005. They last days to weeks then take more weeks to get over. Seems I don't really get over them. Last attack had a few new symptoms. Muscle cramps, hrs of shooting pain in my neck. So many more symptoms, included most I had previously had.

My MRI 4 yrs ago showed 3 lesions. 6 months later, no new lesions. They mentioned MS but said pretty much: wait and see.

My MRI from a month ago: The MRI report stated that I had 9+ lesions and 3 of them were demyelinating and that I met the McDonald criteria for demyelinating disease. My new neuro didn't agree. He pretty much said that the one that read it was an idiot and didn't know what he was doing.

I took my MRI film to my Infectious Disease Dr who is treating me for Lyme Disease and Babesia. He looked at it and said yes he saw the lesions. I ask him to read the report and tell me if he agreed. He did and after looking at the film, he said yes he did agree. I also have a positive ANA speckled result. The only spinal test for MS was probably 4 yrs ago and was negative.

I have had lyme disease and babesia for 20 yrs in May. I wasn't treated correctly in the beginning and an suffering many problems as a result.

I have recently read a study based on the Mayo study that is currently being done on MS to try and find possible causes. They are finding that some causes of MS lesions can be bacteria and viruses and discovered the lyme spirokete in some of the lesions.

My lyme Dr did diagnose me with limbic discharge also known as Dysautonomia. I have researched but haven't understood all I have read. If any of you know anything about this, please let me know. He says it comes from inflamation at the brain stem that affects the sympathetic nervous system.

I have a 2nd opinion Neuro but it is not until June 3. So I have a wait.

I appreciate you taking the time to read this book. Any advice is greatly appreciated.

Prayers....Marsha

MSNik · 04-25-2007, 02:18 PM

Marsha,
Im going to offer you some advice which you probably wont like. Please, stop reading your MRIs and stop trying to figure this out on your own. The first thing any good MS Specialist will tell you is NOT to read too much. Both because the amount of BAD information out there is overwhelming, the "snake oil" salesmen, which have all the cures are overwhelming and most of all, unless you went to school for 8+ years and learned what it is you are reading, you dont know what you are reading. Even if you have a medical dictionary, context and appication apply here.

You sound like you have quite a few things happening at once and I really feel for you; however, because you do, you also sound like you have some great docs looking out for you. If you feel that you want second or even third opinions, you SHOULD get them. This is your health and your body, however, if you feel it is MS, or someone else feels it isnt, the only real way to get a TRUE opinion is from an MS specialist.

The study you quoted from Mayo clinic, is also subject to many things. Although it is possible that any number of viruses might cause MS, its highly unlikely that your Lyme is the cuprit, more of an aggravtor. And, as far as the last paragraph, Dysautonomia, its very rare. The simple fact that you have researched it and dont understand all that you have read, is even more reason to let the doctors do their job and find the answers. Youre going to drive yourself nuts trying to find answers. I dont want you to feel like I am rejecting you, Im not, actually I am opening my arms to you and welcoming you to one of the greatest strengths you will find. (This healthboard) However, if you search on this board and look at diagnosis threads, you will see that it is not at all unusual to have so many differnt things happening at once, and rmember that no two people with MS have the same set of symtoms. You will find one who has similar but not all the symtoms you have, and learn that they are on totally different medications! Its all here, if you read this thoroughly, youll see. The one thing we cannot do, is force a dx - there are just so many things which sound like MS, or seem to be MS. Only a good MS Neurologist can tell you for sure.

You asked for advice, and mine is to wait unti you see the specialist and start there. Try not to self diagnos, and try not to stress.
I wish you well. Im very sorry for your pain and frustration. We are here if you need us.
n

SRSuper · 04-25-2007, 08:30 PM

hey Marsha
so congrats on getting closer to a Dx. i know how it feels to be in limbo for something...sorry its not a "here's a magic pill and youll be all better" dx, but knowing is better than not knowing.
I agree with nik that self diagnosis isnt the best thing. however, i find that there is no disadvantage of being a well informed and involved patient. I went to doctors who are so uninterested in how you feel and what you know about your own body- you feel like a number and not a person with a name. I'm blessed with doctors now that answer my questions and describe their thinking to me but it took me years to find them. my new doc recently put me on some medication (other post thread entirely..) and my comfort with him and being able to tell him everything i was feeling i think may have saved my life...the dangers of anti-depressants. i know this is different than self diagnosis and reading your own test results...but ive had doctors overlook things that were REALLY important, and other doctors just shrug me off to the point where i felt like giving my medical history was received as complaining.
dont hesitate to think through and look through and go through the processes that make you comfortable.
let us know how you're doing:-)

Pearlscale · 04-25-2007, 10:28 PM

Thanks for the replys.

I really don't think I am self-diagnoising myself. I simply had the films for a couple weeks awaiting the third neurologist visit. I think most people would pick up their films and hold them to the light and see if they saw more lesions than were on there before. I know I am not an expert. I don't claim to be. I may not know exactly what I am looking for, but I had to have a look.

My first neuro thought possible MS, that was 3-4 yrs ago. He sent me to a MS specialist who thought there was a real good chance it was MS but still wanted to wait for 6 months and then repeat the mri. There were 3 lesions at that point. Then in early March I saw the 3rd neuro. The second had moved on to better things and the third was in the practice with the first. He diagnosed me with demylinating disease. He said it was from lyme disease. The problem came up when he looked at the mri films and didn't agree with the report from the radiologist that read them. He said the report didn't say how many, didn't tell where, just didn't give good information.

I have since received a copy of the report and it is thorough stating in what areas of the brain the lesions are in and that three do show demylinating with contrast. That I had met the McDonald criteria with 9+ lesions and 3 demyilinating with contrast, for demylinating disease.

I keep my own notebook with all my lab work, drs mail me their notes once back from dictation, all other tests. I take my notebook to all Dr appointments. I am thorough. I have learned I have to be. My daughter is an RN and gives me advice when it applies to her expertise.

I do get on the internet and research alot. Not to self-diagnois but to try to understand what I have. I have to do all within my power to help myself to get well. I do have great Drs. One of which will be leaving the state to go to DC in late summer. I will truly miss him, he is a gem. I've got to find a lyme knowledgeable dr in NC. I'll put my feelers out. One will come up. Dr J might have a suggestion.

The Neuro Dr I see in June has been highly recommended. Even over the one I have been seeing. But since they had my notes from a couple years ago, it made sense to me to go back to their practice. Both my PCP and and RN friend both recommend the Neuro I see in June. So maybe I'll get more answers there.

In the meantime, I'll keep reading these boards as I have been doing for months. I have learned alot from these boards.

Sincerely and many Prayers....Marsha