Neuromuscular Problems Out There?

[shayre]

Hi. I"m new to this site. I've not officially been diagnosed, but tested very high for genetic risk...and have all of the symptoms. my body took a turn for the worse after my last child 15 months ago. I've suffered from fatigue for a long time, but thought that was due to thyroid, and finally got diagnosed after my first child. After this last c-section, I continued to have severe abdominal pain. Then I started to have muscle weakness, like I'd have to scoot my feet for a few steps when I stood up. Then I started almost falling when I got out of bed at night. Then the pain in my legs got severe, and it was excrutiating to walk up and down the stairs...worse going down. Then it spread into my arms. I couldn't grip things as well, and they hurt. Had all kinds of tests, CTs, MRIs, EMG...nothing. I have not decided to go through with lumbar puncture at this time, so my nuerologist is on hold. The symptoms seemed to get better over time, but I also started food eliminating somewhere within the time frame. Then I'd have a relapse, but not as bad as before...then better...then better relapse. I still have some occasional pain in muscle and joints. I will bend over to pick up my baby, and sometimes my legs feel like they are just going to give out from under me...so I stand still for a minute until it passes. I feel like I have the "dropsies" sometimes too. I broke two glasses in two days not too long ago. Is this related to the multitude for GI issues that I'm trying to figure out? I've already cut out almost everything, and I'm very careful about what I put in my mouth. If there is any doubt...I don't eat it. Does this sound like anything to anyone? I've also developed low back and left hip pain and severe stiffness. My neck and upper back have been stiff for years. I also get muscle twitches constantly on my left hamstrings, low back and calf. I did have a "rice krispie" like popping on the left temporal area of my head, but that hasn't happened for a while. I've seen all kinds of specialist, and nothing so far. I meet with my GI doc in a couple of weeks for intolerance testing...and maybe a celiac retest. I do have autoimmune hypothyroid or hashimotos. I also have PCOS (also hormonal imbalance). Any thoughts?

[RiceGuy]

I can relate to several of the symptoms you've mentioned. Kinda scary.

I got what I refer to as nearly miraculous results once I started taking a few supplements. I started with a sublingual methylcobalamin (active form of vitamin B12) tablet. It gradually helped with a number of things, but I just felt there had to be other missing pieces to the puzzle. After doing additional research, I started taking magnesium. Bingo! I was back on my feet in about two weeks, literally, after over 15 months of not being able to walk a single step! The aches and pains subsided fast, and the residual soreness lessened day by day.

I still take these two supplements, and have since added a multivitamin. I find all of them extremely helpful to say the least.

How are your fingernails? Many deficiencies manifest in poor nail health of one sort or another, but not always.

[ravenwoodglass]

I could have written your post. Even after 8 years gluten free my little dog refuses to come into the kitchen when I am cooking because I used to drop so many things and a pan banging will send him running from his usual spot in the doorway.

Did you see the MRI films? If you did were something called UBOs mentioned or did you see any small white spots in the film? My neuro was clueless and although I had these he said they meant nothing. In reality they are diagnostic of celiac that has attacked the brain or gluten ataxia. In the write up on my MRI they stated that 'small focal lesions were seen' but that I needed a spinal to confirm MS as they were not in the areas that MS lesions are usually seen in. I wish my neuro hadn't been so clueless as it would have saved me years of pain and progressive nerve destruction. The good news was that I did heal on the diet but it took some time.

[shayre]

Wow, you have quite a history! Did you end up doing the spinal tap? The lesions were gone on your films? No, I didn't see my films. He said that there were some minor disc changes, but all normal with age. Should I question that? I chose my nuerologist because he has a fantastic reputation. My internal medicine doc has MS, so that is also the doctor that he chose for himself...I only wanted to best. Just when I think that I'm improving, and am "out of the woods"...I'll get some symptoms. I'm working out again. I just had severe leg fatigue and some pain and restless leg stuff last week. I wonder if that's due to not yet identifying all of the foods that might be bothering me? I'm thinking that I should go through with the spinal tap...but what a pain in the rear...especially if I have to return for the blood patch. I have a baby and a 5 yr old, and I have no time to just lay flat for a day or two...or end up with the spinal headache! Thought?

[ravenwoodglass]

Wow, you have quite a history! Did you end up doing the spinal tap? The lesions were gone on your films? No, I didn't see my films. He said that there were some minor disc changes, but all normal with age. Should I question that? I chose my nuerologist because he has a fantastic reputation. My internal medicine doc has MS, so that is also the doctor that he chose for himself...I only wanted to best. Just when I think that I'm improving, and am "out of the woods"...I'll get some symptoms. I'm working out again. I just had severe leg fatigue and some pain and restless leg stuff last week. I wonder if that's due to not yet identifying all of the foods that might be bothering me? I'm thinking that I should go through with the spinal tap...but what a pain in the rear...especially if I have to return for the blood patch. I have a baby and a 5 yr old, and I have no time to just lay flat for a day or two...or end up with the spinal headache! Thought?

Yes I did have the spinal tap. The tap itself was not bad but the headache was incredible the next day so I can understand your reluctance. I haven't had the brain MRI redone since I was diagnosed so I don't know if the lesions are still there. It did take quite a while to see improvement and I did have some ups and downs, especially until I realized I am one of us that reacts to distilled gluten grains. If you decide to have the spinal do make sure you have someone who can take over full care of the kids for a day or two, just to be on the safe side. If you do get the headache you will not be able to care for them or yourself. I had to call a freind who went to get me some very strong pain pills. I would take a dose, sleep until it wore off and wake up to take another for a couple of days.