What Neuromuscular disease fits these symptoms?

[iris986]

1. Muscle spasms in arms, legs, feet, back, ribs and chest. Intermittent

2. Muscle pain from neck down to ankles. Happens continuous when off steroids.

3. The front of my lower legs tighten up as if in spasm.

4. Numbness and tingling in arms and legs.

5. Legs and arms falling asleep.

6. Pleurisy

7. blurred vision

8. Double vision right eye only.

9. leaky bladder.

10. Sharp pains in let side of temple. Intermittent.

11. Severe dry eyes

12. Malar rash on face from sun exposure.

13. Sacral Arthritis

14. Knee pain after taking hot shower.

15. Swollen fingers and knee joints.

16. Fatigue

17. Insomnia

18. scalp pain-intermittent

19. Toe spasms where one toe picks straight up and turns sideways.

20. Major hair loss

21. left sided facial pain-intermittent

22. 26 pound weight loss August 2009 to December 2009

23. dizziness-intermittent

24. Nausea

25. Memory issues

26. low blood pressure.

27. Ulcers in mouth and nose-intermittent

28. rough skin showed up on knees, elbows, knuckles, ankles

29. Bad night sweats

30. Spreading muscle spasm from arm to back to ribs to chest, very painful

31. Bruise easily


Elevated sed rate

Elevated lupus test

Low Vitamin D

Low Vitamin B-12

Extremely high Nor-epinephrine blood level

Diagnosed so far with UCTD, Livedo Reticularis, Raynauds, Hypoglycemia, Mitral Valve prolapse, Hypothyoidism, complete total thyroidectomy, Vasagal syndrome, IBS, Tinnitus

Meds I am on- Medrol   8mg a day

                      Estradiol  1mg

                      Synthroid 88mcg

                      Vitamin D 1000 IU a day

[iris986]

Will get results of all bloodwork on the 14th. Gyno just found a golf ball size mass on my vaginal cuff, ultrasound tomorrow.

[iris986]

I went and talked to my Rheumy today, they re thinking stiff persons syndrome. She redid all Lupus, Sorgrens, RA, etc bloodwork today as well as ordered a new chest x-ray. I also will be getting the Anti-GAD antibodies test done.

[janeebe]

The reason I made my previous suggestion was because of the muscle spasm.  I have had problems of severe muscle spasm (not just cramp) since my mid teens.  It is interesting also that my doctors over the years have suggested that, like you, I might have had connective tissue disease and fibromyalgia.  The problem has been that the symptoms shift depending on the state of the ion channel problem.  Carefully keep off amines (you can find a list of these on the internet) for a week.  If the symptoms change radically in that short time, then I still think it is worth finding out about ion channels.  Most doctors know nothing about these, but I was lucky to be diagnosed in 1996 by a neurologist who had come across them in his research.  There is a good article on Thyrotoxic Periodic Paralysis:  A Diagnostic Challenge by  Annie W. C. Kung (Jour. Clinical Endocrinology & Metabolism  Vol. 91, No. 7 2490-2495)  on the internet.  
I am not thyrotoxic, but the triggers and the treatments are exactly the same for me, as described in that article, except that I get muscle spasm instead of flaccid paralysis.  I also probably waste the potassium from my body rather than just have it shift into the cells during an attack This article also mentions other causes of PP.  I think I qualify for the toxic brain adenoma but this is to be still determined.  
A more invasive, but quicker, way to determine whether the ion channels are causing your problem is to have a blood test for serum potassium during a muscle spasm attack.  At least, this would eliminate ion channels as a probable cause.  Good Luck!

[iris986]

No she keeps calling it undifferentiated connective tissue disease or lupus like syndrome with some fibrmyalgia. Trying to get these doctors to listen or give a diagnosis is near impossible. Even my Neuro won't address the seizures.

[Dr Sharma]

Hi there. You qualify for systemic lupus erythematosus also well.  I wonder if your physician proposed it to you. The 11 criteria used for diagnosing SLE are malar rash on cheeks, discoid skin rash, photosensitivity.mucus membrane ulcers, arthritis in 2 or more joints, pleuritis or pericarditis, kidney abnormalities, brain irritation like convulsions or psychosis, blood count abnormalities like low count, immunological disorders like abnormal immune tests including anti-DNA or anti Sm/ smith antibodies, lupus anticoagulant etc., anti nuclear antibody. Others are tests to check inflammation like sedimentation rate and C reactive protein. Consult with your physician whether this is a possibility. Take care.

[janeebe]

I have had a wide variety of weird neurological symptoms like this for many years.  The general consensus now is that they may be related to the persistence of an active ion channel disturbance perhaps originating from my silvian cleft meningioma.  A European Symposium on Meningioma in 1996 indicated that some meningiomas react to amines such as thyroid hormone, histamine, adrenaline etc (including biogenic amines in some foods) by putting out IGFII.  Various other articles have linked IGFII with causing higher insulin levels (I am not a diabetic) and a calcium channel which, in turn, is then usually associated with Hypokaelemia (shortage of potassium) and hypomagnesium.  Most of my muscle spasms are associated with the latter.  I cannot say absolutely that this is the cause since the proof will be a cessation of the symptoms when I get it removed (soon I hope!).  I certainly seem to be able to manage things better by assuming this is correct.  I have been diagnosed with all of these conditions.  Note that I am a patient, not a doctor.  My Glucose Tolerance test results in recent years have shown a second peak of insulin after the initial rise and fall, while the sugar level is going down very fast.  I get hypoglaemia very easily.  They say that the Hbaic? level shows that I am not a diabetic.  Hope this provides you with some food for thought!

[iris986]

ANA was normal, I believe it was positive for the dsDNA test. ESR was also elevated. All the rest of the bloodwork done for Lupus and RA, etc was normal, all this was done back in January 2010. I've gotten worse and more symptoms including focal other temporal lobe-abnormal EEG which can be set off by Tramadol.

Shirmers test was positive. I have severe dry eyes. But Sjorgrens was normal

I have met all 18 tender points for Fibromylgia

[SLadylani]

Hi, im an RN. By elevated Lupus test, do you mean positive ANA or positive for the double strand DNA specific test or both?