Discussions By Condition: I cannot get a diagnosis.

10 different diagnosis but still no help

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Anonymous
  • April 19, 2008
  • 05:58 PM

Please help! I've been suffering with variuos symptoms nearly all my adult life (32) Every 2/3 months one set of symptoms seems to flare up or get worse and I go and see my GP, I've variuosly been diagnosed with depression, stress, anxiety, narcolepsy, cataplexy, partial epilepsy, osteoarthritis etc etc.

However none of the 'treatments' I've received have helped and its getting worse.

Here's a list of the symptoms I suffer regularly - I'd really appreciate any help.

Muscle Pain
Muscle weakness leading to collapse
Extreme Fatigue
headache
sinus pain
sore throat
swollen/tender glands
Sleep problems (hallucinations, sleep paralysis, non refreshing sleep, night terrors)
sore blurry eyes/vision
earache
anxiety
mood swings
Fever
Chills and shakes

I get what appears to be viral illness's about 6-8 times a year, 2 or 3 of these are really severe. I am freezing cold, aching so badly I end up taking prescription codiene alongside double strength nurofen, and shaking and weak.

Its all made worse by stress/ anxiety or exercise. I try and stay fit but I've collapsed several times after trying to do DIY round the house or on a bike ride.

This is wrecking my ability to lead any kind of life and I'm on the verge of a divorce because my husband thinks I'm malingering.

I'm slim, eat reasonably well, plenty of fruit and decent amount of veg. Mainly homecooked food, not a big meat eater, very little 'sweet' or fatty/fried food. (I get headaches from sugar anyway so my sweets are dried fruit or dark chocolate)
I dropped coffee about 10 years ago and only have 3-5 drinks of alchohol a week. I do drink tea - about 4-5 cups a day, no fizzy drinks and at elast 8 glasses of water a day.

Despite the tiredness I stay as active as I can, I bike or walk everywhere and I have a 3 yr old who keeps me busy and running round.

Slowly but surely though the maount I can do is getting less. I need this to get SORTED or I will lose my husband and my son.

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16 Replies:

  • You may have cyclical Hashimotos an autoimmune disease of the Thryoid. Do read up on thryoid conditions and get tested....TSH FT3, FT4 and the antibodies of the disease...you may also want to get ultra sound of the thryoid to check for nodules and other tests. Mary Shomon's site is a good place to start for thryoid info and a messzge board. Joan
    Joan5555 316 Replies Flag this Response
  • Sounds like a quite classical "chronic fatigue syndrome" (CFS) case. From what you said, you would fit the criteria to be diagnosed with it. Find a CFS specialist for vertification...
    taniaaust1 2267 Replies Flag this Response
  • Have you been tested for Lymes? It is notoriously hard to test for, but your symptoms sound like you have a lingering viral/bacterial infection...Epstein Barr is also a possibility... Please consider seeing a good Oriental Medical doc to help with your symptoms. Traditional Chinese medicine is very useful, and can often make a huge difference. To find a qualified practitioner please visit www.nccaom.org or www.acufinder.com Are you on any medications? Birth control pills? What is your digestion like? Gas/bloating/IBS symptoms? Diarrhea? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • You may have cyclical Hashimotos an autoimmune disease of the Thryoid. Do read up on thryoid conditions and get tested....TSH FT3, FT4 and the antibodies of the disease...you may also want to get ultra sound of the thryoid to check for nodules and other tests. Mary Shomon's site is a good place to start for thryoid info and a messzge board. Joan thanks for advice, I thought one of the defining features of thyroid problems was weight loss or gain? My weight is stable. The pain/stiffness in my neck is exactly where the thyroid gland is I don't have any swelling though just a feeling like something is pressing on my windpipe. How do I go about getting tests done in the UK?
    Anonymous 42789 Replies Flag this Response
  • Have you been tested for Lymes? It is notoriously hard to test for, but your symptoms sound like you have a lingering viral/bacterial infection...Epstein Barr is also a possibility... Please consider seeing a good Oriental Medical doc to help with your symptoms. Traditional Chinese medicine is very useful, and can often make a huge difference. To find a qualified practitioner please visit www.nccaom.org or www.acufinder.com Are you on any medications? Birth control pills? What is your digestion like? Gas/bloating/IBS symptoms? Diarrhea? Best wishesDOM I think lymes is unlikely as I'm in the UK and havn't been anywhere I could have been bitten by a tick. (live in a city). I have no rash either. I am thinking of revisiting an accupuncturist I saw for a frozen shoulder but as I'm unable to work I need to budget very carefully.
    Anonymous 42789 Replies Flag this Response
  • All the suggestions above sound like a good start. I would add to go to check for LUPUS (another autoimmune disorder), but definitely check for Lyme. I had that about 2 years ago and I can tell you I've never felt worse. I'm currently fighting cancer, and I can say that I felt MUCH worse with Lyme....hands down...I also have POTS and a lot of the symptoms could also be explained by that. You could do search online for that and ask for a "Tilt table" test to see if you really have pots or if you should keep looking. Either way, DON"T give up! I know how it feels! GOOD LUCK
    Anonymous 42789 Replies Flag this Response
  • I had many of your symptoms and was diagnosed with Hashimoto's Encephalopathy- rare complication of autoimmune thyroiditis (which I did not know I had). It is diagnosed by checking thyroid ANTIBODIES- which are typically not ordered unless your hormones are off... but most people with HE in fact have normal thyroid hormones and so this diagnosis is missed (most doctors have not heard of it yet).HE can produce extreme fatigue and migraines.
    Anonymous 42789 Replies Flag this Response
  • You may or may not have weight problems. I did not have any weight issue until I was VERY VERY sick...in the beginning you may not. To be tested in the UK go to Mary Shomon's thryoid site and ask the ladies there...I am pretty someone from the UK will give good suggestions (I am in Japan ;)) Joan
    Joan5555 316 Replies Flag this Response
  • Please help! I've been suffering with variuos symptoms nearly all my adult life (32) Every 2/3 months one set of symptoms seems to flare up or get worse and I go and see my GP, I've variuosly been diagnosed with depression, stress, anxiety, narcolepsy, cataplexy, partial epilepsy, osteoarthritis etc etc.However none of the 'treatments' I've received have helped and its getting worse.Here's a list of the symptoms I suffer regularly - I'd really appreciate any help. Muscle PainMuscle weakness leading to collapseExtreme Fatigueheadachesinus painsore throatswollen/tender glandsSleep problems (hallucinations, sleep paralysis, non refreshing sleep, night terrors)sore blurry eyes/visionearacheanxietymood swingsFeverChills and shakesI get what appears to be viral illness's about 6-8 times a year, 2 or 3 of these are really severe. I am freezing cold, aching so badly I end up taking prescription codiene alongside double strength nurofen, and shaking and weak.Its all made worse by stress/ anxiety or exercise. I try and stay fit but I've collapsed several times after trying to do DIY round the house or on a bike ride.This is wrecking my ability to lead any kind of life and I'm on the verge of a divorce because my husband thinks I'm malingering.I'm slim, eat reasonably well, plenty of fruit and decent amount of veg. Mainly homecooked food, not a big meat eater, very little 'sweet' or fatty/fried food. (I get headaches from sugar anyway so my sweets are dried fruit or dark chocolate)I dropped coffee about 10 years ago and only have 3-5 drinks of alchohol a week. I do drink tea - about 4-5 cups a day, no fizzy drinks and at elast 8 glasses of water a day.Despite the tiredness I stay as active as I can, I bike or walk everywhere and I have a 3 yr old who keeps me busy and running round.Slowly but surely though the maount I can do is getting less. I need this to get SORTED or I will lose my husband and my son. These are all classic signs of CFS/CFIDS no question about it. I would suggest you google CDC and CFS, Dr. Titlebaum (sp) has a book about treating CFS, you can reference Dr. Majid Ali, MD website on CFS. You are suffering w/ an infectious agent (chills, fever, anxiety, sore throat, tender glands, sleep problems, muscle aches, night sweats ) Classic signs of infection. Parasites can cause many of the above mentioned problems. They cause alot of ***l and are quite difficult to dx, as traditionally they are tested via fecal smears which are about 5% accurate. Could be a protozoa infection like giardia, crytospordium. Note that parasites often elude blood testing abnormalities unless the infection is rampant. Perhaps the only reliable way of testing is either ELISA or PCR but that would something you would have to discuss with an Infectious Disease doctor and not an internist or GP. Sounds like you are getting a Th2 immune response to me - google Dr. Esther Sternberg NIH chief research endocrinologist and CFS Th2 immune response. These responses involve the adrenals which also explains your moodswings, low energy and poor resistance to stress. I was stricken with this and know exactly what you are experiencing! It is pure ***l! These types of immune responses are very powerful and of course they will be stopped when the offending pathogen is eradicated. These immune responses also cause weakness in the immune system which lead to viral infections (cytomegaleo etc.) which further weaken the immune system and causes stress on the other body functions. Nutritional support of the adrenals is very important, I would suggest you reference Adelle Davis' book , I think it is "lets get well" - she has a chapter on stress and the nutritional aspects of getting adrenal health back on line. (panthothenic acid, vitamin C, b6, b2, linolenic acid etc.) I had such a strong Th2 response that my adrenal results were off the chart (24hr corticosterone, aldosterone etc.) This adrenal response will cause hallucinations, severe mood swings, depression, anxiety etc. I would suggest you google (adrenal fatigue) and (Cushing's) for some basic education about adrenals, and Dr. Sternberg's research should reveal some additional information about the adrenals, This is also known as a HPA axis (hypothalamus/pituitary/adrenal) In the meantime I would think about supplementing with an array of nutrients, particullarly magnesium (not oxide form) with b complex I would suggest Country Life Co-enzymated form, and look into vitamin C and Vitamin A as well. There are many herbal formulas that can support detox and immune building or immune modulating activities, Colostrum has been helpful for me (NOW Colostrum), fresh garlic can provide many anti-bacterial and anti=yeast functions. Magnesium should help sleep, immune, muscle weakness for sure.
    LINENUP 122 Replies Flag this Response
  • Have you ever been to your GP about these symptoms. If yes what has been their response? Have you had any tests?
    ruth40 55 Replies Flag this Response
  • You may not remember being bit by a tick, but since you've had this illness going on for so long, and have many symptoms of lyme, you should have it ruled out. Here's a lab that does extensive testing for it: http://igenex.com/Website/ Also, getting your the ANA and SED rate checked in your blood would help figure out if you have an autoimmune problem. Best of luck!
    Writer53 10 Replies Flag this Response
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  • Have done some research and CFS/ME or Thyroid problems seem possible I'm really unsure about Lymes however, we just dont' get ticks here in urban UK, and I havn't even had a midgie bite since I was in greece 6 years ago!I suppouse it could have been a cat flea but that would have been over 2 years ago.
    Anonymous 42789 Replies Flag this Response
  • I would agree that Lymes seems unlikely. I would check for Epstein Barr. Again, are you taking any medications or are you taking any hormonal birth control? DOM
    acuann 3080 Replies Flag this Response
  • I would agree that Lymes seems unlikely. I would check for Epstein Barr. Again, are you taking any medications or are you taking any hormonal birth control? DOM Sorry for not answering before, not on the pill. Medication: Modofanil (prescribed for daytime sleepiness - started in january) 50-100mg dailyCo-codemol or other over the counter painkillers (usually daily) thats it
    Anonymous 42789 Replies Flag this Response
  • I really think you should get an ANA test done and maybe along a Rheumatoid factor test.It could be SLE, systemic lupus..or any other autoimmune disease
    hollynadine 7 Replies Flag this Response
  • I would agree that Lymes seems unlikely. I would check for Epstein Barr. Again, are you taking any medications or are you taking any hormonal birth control? DOM While getting checked for active mono (EBV).. maybe also consider getting checked for active CMV.. as this virus is very similiar to EBV and just like EBV (as it too is a herpes virus) stays in ones system and can reactive. (both these viruses can trigger CFS) Modofanil.. i dont know what kind of drug that is.. but if it is a stimulant and if you do have CFS.. stimulants often make people with this condition end up worst. In CFS, listening to ones body and rest is very important.
    taniaaust1 2267 Replies Flag this Response
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