Discussions By Condition: I cannot get a diagnosis.

Tremors with fibromyalgia

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: jackrorabbit
  • January 28, 2007
  • 01:17 AM

I have been to UVA to John's Hopkins to NIH(who dismissed the tremors as anxiety after less than 2 hours). No one has any clue as to what is causing it or why. I have multiple doctors including ER doctors who have seen the tremors and say there is no way it is anxiety because I lack the panic and worry that goes with anxiety. I have tremor attacks 2+ times a day lasting from a couple of minutes to over an hour in length; they almost always begin in the right shoulder and then move to the right leg and sometimes both legs depending on the severity of the attack. My wife has seen me looking grey at times during attacks. I have had nausea, hot/cold spells, cold with sweating, speech troubles during a tremor attack, a 2 year long headache(which has been attributed to the fibro), during an attack I have difficulty keeping balance or walking. I have a chronic recurrent sinus infections(even after 4 surgeries in one year), an appendectomy during the surgeries. I have been tested for just about everything that is normal to look at including Huntington's disease without any answers. My B-12 and vitamin D levels are very low and I am on suppliments for both. My wife and I are truly befuddled and frustrated with the whole situation. Any help would be nice.

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5 Replies:

  • Maybe you need B12 shots instead of oral supplements. Why is your B12 so low? Don't you eat animal product or do you have pernicious anaemia? parietal cell antibodies? Has your thyroid been checked? If so what are the numbers. What is normal for one doctor can be quite different for another.
    angelad 2 Replies
    • January 29, 2007
    • 09:53 PM
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  • B-12 lvl is in the 300's Thyroid is okay and has been fractured for the breakdowns. Vitamin D is 1/3 of normal which it shouldn't be since i eat a fair amound of cheese, but being winter here not enough sunlight. Alk-phos is just a bit high over normal and that has been determined to be the liver one so I'm waiting on a specialist for that, and we are now checking for sprue to see if that is why Im not absorbing the nutrients. I eat plenty of red meat as well as chicken, fish and turkey. If I lack anything it would be in the veggie department. Too much veggitales just cant eat Bob and Larry (LOL).
    jackrorabbit 113 Replies
    • January 29, 2007
    • 10:00 PM
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  • Have you looked up fibroglicemia I think thats how its spelled
    Anonymous 42789 Replies Flag this Response
  • Hello, Tremors can be caused by adrenal problems. I was told I had anxiety for 5 years until I finally got diagnosed with adrenal fatigue by an alternative health care practitioner. Regular doctors are not taught about adrenal fatigue unless it presents as total failure in the form of Addison's diseases. Some integrative health M.D.s are starting to recognize this problem. You will need to have an HPA profile done. You can look online and find one to order so you can do the testing at home. You will want a kit where it tests your saliva at 4 different points during the day. The HPA profile kit from Sanesco Labs is extremely comprehensive, will test your DHEA levels (which is the precursor to cortisol) and will also test your neurotransmitters. Hope this helps!
    medmal 1 Replies
    • November 23, 2008
    • 11:08 PM
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  • Have you looked into Pagets, or Cushings Syndrome?I can definitely relate to you on the anxiety front. I think doctors should be banned from telling people their problems are all panic related, and not real. It's ****ing obnoxious hearing that for every single problem.My theory is that they drop the anxiety line either A) because they don't know what the problem is, and don't want to appear foolish or B) they want to avoid using resources as much as possible, so when a problem doesnt seem completely life threatening to them, they tell the patient its just anxiety, and that they shouldnt worry about it. When really, no testing has been done to see if its something more serious.Definitely one of the most obnoxious things in the world.Get a second and even third opinion on whether or not you have pinched or damaged nerves or anything like that. People sometimes miss these things, and say there isnt a problem, and then it gets left for years and worsens.Get your cortisol levels checked. Get your dopamine and serotonin levels checked. Demand any other testing that you feel is necessary. If they tell you it's just anxiety and that you shouldn't worry, demand the testing anyway, and don't take no for an answer. These people won't listen unless you really make your demands clear. They still don't often times, but if that happens, do not be polite about it. If it's a reasonable test, and they refuse to order it because they don't want to waste resources (or in the states, they don't want to piss off insurance companies by costing them money), then there is no reason you shouldn't get it. Raise ***l until you get what you want.I hope you find the problem and sort it out. I'm 20 years old, and have been dealing with numbness, tingling also, and don't know what it is. It's definitely a pain in the **s. Good luck to you.
    Anonymous 42789 Replies
    • November 24, 2008
    • 04:23 PM
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