This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone, I'm new to the forum. Since I was a late teen I've been experiencing worsening pain symptoms, and until recently have not been able to find a decent physician to take my condition seriously. Early on, my condition was quickly passed off as fibromyalgia even though I don't meet the symptoms (tender points ect) I was also tested for lupus, had an EMG, and checked for any rheumatological conditions through blood tests. Other than that, nothing more than a basic exam was performed on me and my constant complaints were ignored. I also saw a neurologist who lazily passed everything off in a matter of fact way, and responded to my frustrated tears by saying I will probably never know what's wrong. Grrr . . . only 1 visit with him and he gave up immediately. I did look him up on ratemds though and apparently he has a rep for being lazy about evaluating patients. The pain seems to be getting worse with time, which concerns me that it is a degenerative condition.

As mentioned, I finally have a great doctor who is looking into the possibility of MS, but do not have the MRI for a couple days. This pain is severely limiting me in college and I only have a few quarters till I graduate, so my time is more important now than ever. I also have a 2-year-old who is very busy and it's hard to manage.

Let me tell you some of my symptoms and maybe you can tell me if MS sounds like a legit possibility till I get w/my doc to hear his insight.

Here it goes:

Cognitive dysfunction (poor memory, trouble processing info)

Random stabbing/feeling of being poked with needles in my knees. OMG it's awful!!!

Tired

Soreness up and down spine

Difficulty finding comfortable sitting position to subside the pain. When I cross my legs, I feel soreness in my knees/ankles. I don't know if that it the reason I hate it when my knees touch each other when I'm wearing something like a dress or shorts that do not cover my knees.

Lately it's worsening and I'm getting pain in my spine near my tail bone and it's inflamed. The pain is fiery at the tail bone, but leads all the way up the spine and gets duller the further away it gets.

At any time on any part of my body I will feel a dull pain for no reason at all.

Severe fatigue in arms and legs when I hold them up or use them for
even short periods of time for writing ect. They feel exhausted and I have a fiery feeling in my wrists.

Random unexplained intermittent twitching in legs

Unexplained itchy feeling often in random unexplained parts of my body (arms, legs, wherever. . . )

Tingling feeling in knees more lately. It used to be mostly an occasional tingle in feet and mostly wrists/hands, but seems to be spreading.

My legs/arms lose sensation easily when sitting/placed in certain position.

Widespread achy pain at random parts of my body at any time.

Bowel dysfunction that causes terrible bloating and upset stomach no matter what I eat. Pepcid and Tums do not help either.

I know I have more symptoms, but till then, do you think this could be ms? It hurts to walk , it hurts to sleep, it hurts to sit, everything hurts!!!

Do you think this could be MS? I've been in every direction but MS and I'm exhausted and in pain. I want answers. Any advice is greatly appreciated.


I've tried lyrica, cymbalta, and Savella, but nothing seems to be working the way it promises.

Have you been tested for Lyme's Disease?

Hello, thank you for the reply. I'm not exactly sure, but lyme disease was immediately ruled out even though a lot of the symptoms concur with what I am having.

I did tell my physician that when I was 12 my family and I were on vacation in Texas and my sister and I found an abandoned dog we temporarily adopted and placed with a vet before we left. When we lifted the dog's ears, the poor baby had ticks latched on to her all over, so we just didn't have the heart to let her suffer. It's been 15 years since that happened, so I guess my doctor assumes that if it were lyme disease, it would of progressed severely by now.

We recently had a family fried who was very into sailing and active abroad, and she ended up contracting lyme disease. She was a very bright, intelligent girl, but it only took 3 years after she got it for her to pass away. Such a sad story too, because she was the same age as me (28 with a lot to offer the world.

Do you still think it could be lyme disease after all these years gone by?

FYI - there is a more expensive test for Lyme that doctors normally don't order but it is more accurate. Unfortunately I don't know what its called but you can probably find info online. See if your doctor used that test & if not, see if you can get it.

I totally think it could still be Lyme Disease. There is a movie out, Robbie put a link somewhere:
Amy Tan talks about her experience on her homepage: http://www.amytan.net/
And maybe it is another bacteria: http://www.uvaldeleadernews.com/article ... /news1.txt

Of course, Lyme's is hard to test, and hard to find a doctor brave enough to treat it properly. What the movie is all about, I guess. (But I haven't seen it yet)

I also think you should get tested for coeliac disease. Your doctor usually can do a blood test for preliminary testing, and based on that result, if it's positive you get a biopsy done of the upper intestine (sounds a lot worse than it is!).
Coeliac disease can cause widespread pain, bone/joint/nerve. It can cause neurological symptoms, psychiatric symptoms even, and it also causes severe bloating like you mention.
It just so happens I have the bad luck to have MS and coeliac disease, but I think that's pretty rare. The coeliac part of things is easy-peasy to manage and I am glad I know about it - my general health improved 100% once I followed a gluten free diet after diagnosis.

In your case I read the list and just thought coeliac. If you are tempted to get tested, blood or biopsy, be sure to eat LOTS of gluten in the 6 weeks prior to the tests, every day. For example a wheat cereal and a few slices of wheaten bread each day. Otherwise you might get a "false negative" result.

Wish you all the best and hope you get the answers to the upsetting symptoms you have.

Well, I met with my doctor and he drew blood today to test for the lyme. I asked him about celliac and he didn't seem too interested about pursuing it. After I get the results back Monday, then it's off to the imaging place for an MRI on my spine. If it were celliac, would it be degenerative like this though?

Push for the coeliac test Marie. I'm not trying to diagnose you - I'm not a medical person - I just saw my father was diagnosed only in his 50's after a lifetime of mis-diagnosis, and I was in my early 30's before I was diagnosed. I'd had bloating and wind since my early 20's but was misdiagnosed with IBS. If it's not coeliac you can just rule it out from a simple blood test.

It is as many as 1 in 100 people with coeliac disease - versus 1 in 1000 people with MS, and 4.73 per 100,000 of Lyme in US - coeliac is the most likely of all three by a long way. http://www.coeliac.org.uk/coeliac_disease/default.asp

Doctors tend to be very un-educated about coeliac disease. At time of training they were told to look out for the classic childhood symptoms of bloated stomach, diarrhoea and failure to thrive. Those symptoms are present in some coeliacs. In others they might have others symptoms - even obesity, tiredness, depression or anxiety, wind, weight loss, normal weight - it just varies from person to person.

I think it's worth ruling it out, if nothing else. I just meet so many undiagnosed coeliacs - my next door neighbour has dermatitis herpatiforms (some coeliacs get this form of dermatitis) and her brother is a coeliac but she's not keen on getting tested.........she has bloating and tiredness.......
HTH

Just_Me wrote:FYI - there is a more expensive test for Lyme that doctors normally don't order but it is more accurate. Unfortunately I don't know what its called but you can probably find info online. See if your doctor used that test & if not, see if you can get it.

Well, got the labs back on lyme and they were neg. Now I'm back to square one; an unfortunate scenario I'm becoming too familiar with. I see the doc tomorrow about an MRI to check for lesions. At the same time I will request a celiac panel. thx