Discussions By Condition: I cannot get a diagnosis.

Fatigue, MS like symptoms, and other undiagnosed aggravation, PLEASE HELP!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: airviper
  • May 31, 2012
  • 06:12 PM

Ok, these symptoms have been coming and going for the past 10 years, but they haven't eased up in the past year. Most of this stuff started when I was in college, but looking back some things have been happening since i was about 12 or so. I am 30 right now and I shouldn't be feeling this way. I say fatigue because that is the biggest thing, I am always tired, sometimes run down and need to eat(like my blood sugar bombs). The MS like symptoms: I have the fatigue, spasticity in my arm, leg, and back muscles, clinical depression, problems with balance/stumbling, and intermittent lack of strength. What I experience was almost like arthritis through all of my joints, but as things progressed I realized that it's in the muscles, sometimes it feels like they fight each other. For example I climb the stairs in my house, get halfway there and I have to stop and take a break because my leg muscles are so tired. After 10-15 seconds I continue on my way.

The fatigue, tiredness comes from not being to calm everything down with my muscles. I can sleep 7 or 8 hours, or 10 hours and still feel blah and tired all day, some days all I want to do is sleep. When I do some work outside, like some light gardening, if I am down on the ground for a couple of minutes, I stand up and my legs do not want to straighten out, and I stumble around for a few steps until I get moving again.

I also get migraines, have an easy time of getting ear infections and head colds. The migraines are classic migraines and actually fit under an ion channelopathy neuromuscular disease, but that could be coincidence.

I have been checked out by multiple doctors over the past 10-12 years, a bunch of stuff has been put on the table and eliminated. I've been tested for thyroid issues, hormone issues, muscle degeneration, rheumatoid arthritis, lyme disease, and a bunch of other stuff. Everything comes back normal, the CBC, iron and liver and kidney and blah, blah, blah. Sed rate is fine, even though it feels like my muscles are always irritated. Most of these tests were done 3-5 times over the 10-12 years, with no changes.

So then MRI's, of my brain and then neck, for MS and whatnot. Everything came back fine, the only things they found were a polyp in my one sinus, and slightly enlarged adenoids. These mri's were with and without contrast, no signs of MS lesion issues.

Started working with 2 neurologists, first one was thinking a metabolic myopathy where My muscles can't utilize fats and proteins for energy, that's why the short bursts of energy. He did an EMG, sent me to a neurophysiologist to continue. She did another EMG, an extensive one(about an hour), where she saw that my muscles are very irritable and show signs of cramping potential. This pointed towards Myotonia, Myotonic Dystrophy, and Ion Channel Problems. So we did an expensive genetic test with blood that covered everything that could be tested for as stated above. They all came back fine, so now I am awaiting a muscle biopsy to check out ion channel deficiencies and problems with sodium and potassium, etc.

I was diagnosed with clinical depression about 3 years ago, I am on 30mg of celexa and monthly therapy. The neurophysiologist put me on 200 mg of Dilantin to help ease the spasticity in my muscles, it helps some, but everyday is different.

I don't know what else to do, the doctors are still stumped, and even the muscle biopsy is being questioned, because it probably will lead to nothing. Some days are good and some days are bad!

I have issues working, and need some advice as to what to do, where to go with this... I mean today it's all I could do to walk back from my mailbox and it's 100 yards from the house. My parents are in their 60's and get around better than I do, so this is a bit aggravating, especially with not getting answers.

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2 Replies:

  • Get tested for all of the tickborne diseases. I have had all your symptoms for 35 yrs. and was diagnosed with FMS and RA. Some friends of mine call me after watching a program on Lymes disease and wanted me to get tested. I have uncurabe Rocky Mountain Spotted Fever. Don't hesitate.
    Barbw1re 16 Replies Flag this Response
  • Have you had your adrenal glands checked? Could be Adrenal Fatigue, it is hard to diagnose It is best done with a saliva test. Are you craving any particular foods, like salt or milk or chocolate? If you are good chance it is your adrenals. they can put you to bed exhausted and waking up tired. Also you will fall in bed and go to sleep immediately only to wake up 30 minutes later and can not go back to sleep. Your heart will do flippity flops and every muscle in your body will hurt.
    Harriett51 2 Replies Flag this Response
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