extreme muscle cramps

Hi Ive suffered extreme painful muscle cramps, fasticulation, weakness, suffer with cold limbs, cannot feel items well in my hands - eg cannot tell if there is water in the glass-only by sight not feel. This has progressively gotten worse over the pastrs- I am now fulltime in a power wheerchair. I still remain undiagnosed - my paper owrk says "Muscle Cramp Syndrome". Ive had an MRI, EMG blod tests - all apparently OK. I had  muscle biopsy done 7 years ago - the Dr said it came back fine. Ive had numerous gastro surgery due to problems with gallbladder and bowel.
Ive just had uterine ablastion due to me being constantly aneamic-  which according to the Dr is due to my periods - which are very regular. ( I had 3 transfusion in the past 2 years because of anemia) The Dr who was taking my history proir to surgery said he noted from my history that I had a nuerological disorder  -I told him it was undiagnosed - he responded that according to my biospy report I have a disorder which was probaly caused by a severe injury/illness/virus as a child - and advised me to ask my parents.
This was news to us - great news we thought - asked mum - she said Id been very ill in hopsital as a child with measles. We reported this to the Dr who said it was the likely cause of why Im where I am today.  Why has no-one told me, as apparently I could have been doing something to prevent myseld ending up in this chair!!!  
My muscles over react - when I use a muscle it thinks it is doing so much more than it really is therefore acts like an over worked fatigued one, and cramps. I do not have any tiredness or feeling of being unwell in myself at all - which is frustrating. I sleep in 2-3 hour bouts - as I must move my muscels to a new postion or they will become cramped from the one postion for too long! Can anyone offer help, suggestions, or do you have similar conditons to mine?? I welcome any comments please, as I used to be a very active fulltime working mother of 4, wife, and farmer who enjoyed alot of sport and was social and happy. Any help.thoughts, suggestions please. cheers, Su

[free3667]

What specific blood work was done if you know? Muscles need calcium and potassium to function properly. The slightest imbalance can cause many of the symptoms your have described. An example would be if you have low potassium you could experience symptoms of decrease in muscle contraction (less movement), weakness, paralysis, cardiac arrhythmias. Potassium levels have a very profound affect on the heart. So levels must stay within range. If you have too much potassium, you might experience irritability, nausea, vomiting, abdominal pain, diarrhea.  Calcium has a major function in the bodies central nervous system. Too high of calcium levels can lead to difficulty thinking, restlessness, constipation, decreased muscle reflexes, and possibly headaches, Too low can cause tingling in the muscles, painful muscle spasms, muscle pain, gallbladder pain (colic), sweating, low blood pressure.  To treat any of this can be a range of just adjusting your dietary needs, supplements, meds, finding the underlying cause. I wish you the best and I will keep you in my prayers.

[su46]

Ive had every blood test under the sun. My potassium levels have often been too low - always treated and then been ok for ages, till the next time it happens (who knows why. lol). All other tests are within normal limits - except for aneamia as I mentioned - for which Ive had 3 transfusions in the past 5 years.
My eyesight and hearing has decreased profoundly over the past 2 years  - Ive been told I need hearing aid in each ear, and although I had new glasses prescription just 6 months ago, my glasses are no longer correct for me  now - also the 'nature' of my poor eyesight has changed - ie I was shortsighted - but now whilst still am, I cannot read books etc as I get  double vision now, which is new for me.
I thankyou for your reply and concern and welcome any further suggestions. Thanks for taking the time to reply.
cheers, Su46

[free3667]

Have there been test to check how your kidneys are doing? Potassium is regulated by your kidneys and so are the hormones that make red blood cells. If there is a problem with your kidneys, these could account for the anemia too.  Blood pressure is also regulated by your kidneys by the hormone Aldosterone. It seems like you may have issues with your kidney function. A lot of your symptoms reflect electrolyte imbalances like the potassium, but they are coming from kidney issues.

[Mayerstein]

IMO, it sounds like it could be something neurological. Are you under the care of a neurologist? If not I would highly recommend seeing one. Good luck.

[Mayerstein]

I say that because of the lack of feeling in your hands and being unable to distinguish if there is water in a glass, etc.

[su46]

Thanx all 4 ur replies - yep Ive seena neurologist - who couldnt give me a diagnosis, just agreed something was 'off' - had MRI -OK. I regards 2 ur kidney comments - I do have one kidney larger than the other - cause - again, unidentified. I feel as if Ive had every test under the sun, some suggest something is not quite right, most within normal limits. Regarding my blood pressure - it always used to be very lo - 100/60 - but in the past 2 years its very unpredictable - ranging from 100/60 - 180/120 -so again frustrating.
Despite havingy gyne poblems fixed, I continue to be anaemic, but no one else seems to be concerned by this but me!n
So I am presently under 2 diagnosis - "Muscle cramp syndrome" and "Undiagnosed Nuerological Disorder".   Both of these basically say " actually we dont know"  SO FRUSTRATING.  Im not sure if I mentioned the nunb/pins&needles in my legs&feet - hips to toes - Im only remembering to add thins now as I've just had a night with this - out of the blue, and it dissappears in the same way.
Please can anyone shed some light - im very happy that you've taken the time to read this. Please have yourself a very happy day. cheers Su

[Lori707]

I would suggest that you see an Endocronolgist and get your Vit.D level checked along with being tested for antibodies for Hashimoto's Thyroiditis.

There is a place that's a Neuro Center where people go when all other doctors can't give a deffinate diagnose. They are fantastic.

NeuroScience Institute.
at JFK Hopsital
Edison, NJ
732-321-7010

People come from far to them.
Hope this helps. If you have any questions please ask.
Be well!

[su46]

Hey thanx 4 ur suggestion - I sure would need 2 travel from far - New Zealand actually, so unfortunately thats not an option. As a small country, whilst being up to date, we do  not have the resources big countries have/choices/options avaliable 2 us. I try to keep my muscles moving as much as possible each day, despite knowing I will pay a painful price, as I truely believe that there is something that has been missed, that will turn out to be relatively simple to correct - as I know how fit and active I used to be - therefore I want to preserve as much muscle function as possible so that when that day arrives, right after I say I told u so, I can run across our farm to the very back and swim in the river :)

[free3667]

An enlarged kidney is NOT normal. If you only had one kidney, then that one would normally enlarge to make up for the one missing. Since this is not the case, I would see a urologist. An enlarged kidney could be caused by diseases like polycystic disease, hydronephrosis, kidney infections, etc....It needs to be identified. I know that seems easier said then done. I would not give up on it until a cause is found. I am not familiar with the healthcare system in your country so I do not know how accessible specialist are. I truly believe a big portion of your symptoms is kidney related. Feel free to google from reputable web sites and look into kidney problems and signs and symptoms. In the U.S., the Mayo Clinic and John Hopkins are very reputable medical facilities, they have great web sites for people like yourself. Please do not give up, a cause will be found.