saja wrote:...First let me say that although I know it's unwise, I have not been to a doctor for financial reasons, in several years now. I will be 49 years old on the 17th of Feb. of this year. When I did have a GP, it was difficult to find a decent one in the small town that I previously lived in. So, I have never gotten any answers to the symptoms that I have had over the years. I now live in Chicago and have my first doctor's appointment in years this coming Thursday, Jan. 9th.
My first indication that something was "wrong" was when I developed a slight head tremor in my early 20's. This was not overly noticeable at first but as the years have passed and over the last 3-4 years it has become very noticeable and troubling. I cannot hold my head still and the tremor makes me very self conscious and embarrassed. Along with the tremor I have had serious problems with fatigue on a daily basis. No matter how much rest or exercise I get this never changes. I am beyond tired, like my whole body is weighed down. I have had brief periods of time where I will feel better for a few days and then it's right back to the debilitating exhaustion. I have to rest between anything that I do and have become very sensitive to heat. If I even have the shower too hot, I feel like I'm going to wilt, or passout. Along with this I also have issues with numbness. This started in a very odd way, in both little toes of both feet. They went numb and stayed numb for days and then it just went away. This has happened with various fingers as well and more recently the lower left side of my face, near my mouth will go numb. It's the strangest feeling! I also have had periods of time where particular parts of my body feel like I have a sunburn on them, but of course, I don't. My upper thighs burn and often give this sensation, sometimes my upper back. My arms often go numb and wake me from my sleep because I cannot move them. My hands will feel swollen during this time but they aren't. It's all so confusing and crazy sounding, I know. In my early 20's when I first developed the head tremor, I also started to have problems swallowing and I have that issue to this day. I have to be very careful drinking and eating or I strangle and choke. I can no longer swallow most pills. Over the last 6-7 years I have had a great deal of trouble thinking. It's very hard to explain but it feels as if my brain has slowed down and stalls out on me when I am trying to speak or perform tasks. I find myself typing the wrong words, completely different than what I had intended to write. I also have a hard time "finding" words and expressing my thoughts. I am terribly forgetful, terribly. I will forget things sometimes within mere seconds or minutes. My long term memory seems fine. My vision is VERY blurry, but not all of the time. This will last for a day or sometimes several and then improve. It looks as if I am trying to look through oil or something like that, everything is a blur no matter my distance from it. My balance has been off for years and is getting worse. I run into doorways and stumble all of the time. I am having a VERY hard time going down stairs, and I live on the second floor of our building. I feel unsteady and like I am going to fall. My legs also get SO weak and tired! I had a spell last summer that lasted about a week and I honestly did not think I would make it up the steps. It took everything I had to lift my legs to walk.
I know this is very long and I have listed a ton of things but please keep in mind these have gone on and or developed over 20 plus years. I started trying to find answers on my own and everything keeps leading me back to MS. I realize that until I am able to find out one way or another there isn't a lot that I can do. But, to be honest I'm pretty scared about finally finding out. I want to know either way but it's scary. Anyway, I just needed to share this with someone. I don't want to worry my family and especially not being able to tell them what's actually going on with me. Does this sound like MS to you guys? Do you think my doctor will suspect MS and if not should I just tell her what I suspect and asked to be tested?
Thanks so much for reading this TOO long post and for any advice you may have!
Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (In view of the information below, I think it is VERY important to check for this gluten sensitivity.)
Hepatitis C and B
jimmylegs wrote:glad to hear you have not been suffering due to the high dose hopefully you're absorbing lots! it's possible that it's going well because you do need it. b6, good to know. that's needed for magnesium utilization.
as for the tests. hope you get a cooperative doc who will order everything on your list
regarding the vit d test, be sure to specify serum 25(OH)vitaminD3.
and you might be wise to get a calcium assessment as well - needs to be balanced against magnesium properly.
great idea to take the symptom list to the doc as well.
I was dxd in 2006 and it was FAST b/c I was about to go on a long overseas trip and so the decision-making was pretty urgent. in the end I had to delay departure and shorten my trip from a year to 5 months :S
I DID have to get that nasty spinal tap thing. had a bad reaction. cross that bridge when you come to it - we have lots of info on that stuff here.
I would strongly recommend dealing with any nutrition problems first - might get the list of symptoms down to a more reasonable size. and I imagine that could make an eventual diagnosis easier for the doc.
jimmylegs wrote:no probs you could probably say 'no' to an LP if it came down to it. no ms test to date is conclusive. just one more item on a checklist. as yet there is no single test that is seen always in patients and never in healthy controls.
re the nutrient tests. ms patients tend to have low-normal nutrient levels while healthy controls have high-normal nutrient levels. so make sure you get your own copy of the results, even if they are 'normal'. then you can compare to average ms patients and average healthies to see where you're at
lyndacarol wrote:saja – It sounds like you have found a very good doctor. If not, or if she wants to refer you to someone else to check out this gluten-sensitivity angle, you are fortunate to be in Chicago where Dr. Stefano Guandalini is medical director of the University of Chicago’s Celiac Disease Center: http://www.cureceliacdisease.org
On the subject of lumbar puncture (LP)… I have never had one. My MS diagnosis was made on the basis of my symptoms and my fourth MRI, which finally revealed lesions.
saja wrote:If I might ask, what was the time length between your first and your definitive MRI? Did it take a long time to get your diagnosis? I have been reading about so many people who have had to wait very,very long periods of time before they got diagnosed. I truly hope that it does not take months or years for me since I have been having symptoms for years now.
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