Looking for answers..MS?

[Tifft]

Hi there I am 35 years old and have been dealing with so many medical issues this year that I am frustrated and just looking for answers and support.. I was diagnosed 9months ago with celiac after dealing with a lot of abdominal issues I was able to get in to see a GI and that was my diagnosis after a biopsy of my small intestine. Dr recommend a gluten free diet thinking that would help as it did for about 4 months then it was full circle again, I have had so many blood test done, a CT scan, in the doctors at least once a week I think they think I am crazy! So here are my symptoms in hopes someone can help. I get extremely fatigued with very little energy to get dressed in the morning when I do I feel very winded, I have had these electric shocks mostly in my neck and upper body, I get random aches all over including my shins, hands, knees and elbows almost feel like arthritis (dull painful ache), I did have a feeling of a nerve vibration sensation down my back along my spin, when I get overheated my heart races (120bpm) and I feel as if I could pass out they only thing that helps is to cool down, I began to see floaters a couple months ago and now that has progressed into what looks like a hazy blanket over my eyes sometimes i get pain mostly I notice it gets worse with bright lights and yes headaches that can last two weeks... these symptoms come and go the area of pain travels
to different areas. I am so confused I have been to the doctor he wont take me serious just wants to put me on heart meeds, anxiety meeds (yes I have anxiety but I feel it has a lot to do with my health stress) and I have lost about 10lbs in the last 6months...I am frustrated and trying to search for answers on my own. Any suggestions?

[melo1224]

I have all of the same symptoms except my Celiac test was negative, however doctor wants to repeat it b/c I had a signficant amount of Eosinophils in the biopsy which he said are present from Celiac or Parasite and I tested negative for parasite.

I have several posts here if you want to look at my history you may relate.
Today i found out that I did have a positive result on Lyme disease so we're looking into that now...

I'm wishing you good mojo!!! I cried my eyes out at the doctor today when he said he didn't think it was MS.. I mean who cries when they hear they are not diagnosed with a terrible disease?

If you want to smile here's a funny! I have a male doctor and when I first started crying he didn't realize I was breaking down and he said "oh,, you gotta sneeze?" I started really crying and replied " No, sniffle, sniffle" and he said " Oh you're worried"  ,,,,,,,,,,,,, sorry guys but that' totally a male response to a women crying :)

[twopack]

I add my own welcome to G-grrrl's.  Like her, I see you have been through a lot but don't see a clear link between the picture you share and what I know about MS.

If your Celiac diagnosis is based on a small bowel biopsy then I wouldn't think there is any question but that it is correct.  I hope you haven't given up on the gluten free diet.  I know that gluten can "hide" in many places and some people are very sensitive.  It also takes quite a while (sometimes years) for the small intestines to repair itself.  Even when intestinal symptoms have calmed down you might continue to see new signs of the damage done by Celiac to other body systems.

Is it possible the initial diet restrictions helped by cutting way down on gluten intake but you are now reacting to much smaller amounts that you are ingesting through an unrecognized source?  If so you might look at the possibility of additives and fillers used in foods and medicines.  There is also a possibility you are reacting to corn or rice products that were contaminated with gluten when processors used the same equipment to process multiple food types.  It doesn't always take much - especially now that your body hasn't had to deal with a huge overload on a regular basis.

There is also the possibility you have unmasked an additional autoimmune disease.  People with Celiac (and other AI diseases, like MS) are prone to develop additional AI diseases.  I know, it just isn't fair!!  It just is.

With the number of joint symptoms you have and the heat sensitivity and cardiac symptoms I'm wondering about one of the many types of AI arthritis (any arthritis except osteoarthritis) or AI thyroid disease.  A rheumatologist might be able to help you find out.

Unfortunately, you are most likely starting out on a second ride on the long journey to diagnosis treadmill.  Of course, MS is autoimmune in nature as well so I guess you might as well check for that too if you (or your docs) see reason to suspect it.

Good luck to you.  Thanks for stopping in here.  I hope we are able to help you find a direction even if we don't have answers.

Mary

[Guitar_grrrl]

Hi, and welcome to the forum.  I'm sorry you're going through so much!  It sounds like you have a few neurological symptoms, and a few that don't immediately scream "MS".

Can you see a neurologist?  Get an MRI of your brain, C-spine, and T-spine w/wo Gadolinium?