Discussions By Condition: I cannot get a diagnosis.

Muscle weakness, tremors and Many more symptoms for 20+ yrs

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: imatthebeach
  • July 9, 2007
  • 00:28 AM

Hi, I am 46, female and have been hoping for answers for over 20 yrs now. Tho I had a few symptoms (I did not realize were symptoms) as a child, like weakness when I chew. I became very ill around '85 and was left with many symptoms to deal with which I realized three years ago all increase or decrease with using my muscles. I am so tired of having to explain symptoms. Here is a basic 'list'.
#The more I use my muscles, the worse I get! All symptoms increase the more I do. Literally.
Tremors, hard to walk..very slow, legs have to touch down a few times to finish gait. Waddle, weakness lift arms, face pulls down on right mostly, eyelids go down-mostly right side. Lose speech, become hoarse, diffucult to breathe-especially out, a few numb toes, longer look up-eyes difficult to look up-eyelid and pull down-feel difficult to move normally especially to left, neck hard to hold head up, left hip pulls crooked and up. Weight gain, numb spot on left lip, times when pins and needles in hands and feet, Muscles pull tight in torso and fold me over if really been active. Now and then my legs totally cut out, no feeling, on the ground till they work again, usually three minutes? Memory problems, long term and short. Cognitive problems.Very heat sensitive. Heart gets worse along with everything, releived with nitro. Bladdar and bowel leak, bladdar sometimes hard to empty. Skin from jaw to collar bones will become very sensitive, along with some places on my hips an thighs. drop things, Back tight and folds me over when (trying) to walk....on and on.... gives you a picture.
My original physician in Alaska suspected MG or muscular dystrophy. The neurologist he sent me to at the time said 'mental'. This shocked him. I was tested for everything.
(I was never told anything I had going on was a symptom. Like not being able to lift my arms. This definitly hindered me. some doctors didn't let me explain anything unless it had been 'diagnosed'.)
MRI of head showed three small spots, I am told these days are age spots. Nothing diagnostic. Same as twenty years ago.
A few times, along the way, I tried to see an intern, since my liver and spleen had become so tender when it hit and thru the first year, and my liver is usually last click 'in' normal range.' Enough to flag a surgery, but not to have looked in to, I am told. Once came up positive for hepatitis, retest was not positive.
(A few years after onset, I went thru a time where I was so cold, I felt if I got any colder, i would not make it. Something would drain from (? ) my head, (tho chronic sinusitis, not at this time)it smelled awful, would wake me from a dead sleep. It would run down back of my throat and sear my stomach. It made me so sick, I would throw up. When that subsided after a few months, I went thru atleast 3 months where I smelled just awful. Severe odor coming from my body. My poor family! Ha. I had to throw away all the bedding and clothes. I did not swell quite as much after that happened. )

Well, I dared to try the doctors again 4 years ago. Alot of drama led me to a neurologist who blew raspberries in my face and wrote a report I am obcessing so much I am making myself have symptoms. (quite the opposite, I run on water trying not to have them) I demanded then to have his diagnosing " psychogenic/conversion/somatic' ruled either way. I do not believe you can diagnose that in one visit. I would accept it from a 'professional'. (there were extenuationg circumstances at that visit I have no doubt contributed to his ridiculous behavior)
So many doctors tell you what you don't have! Big deal, tell me what I have. If you think something mental, do it dignified and to help me.
On my own I have done alot of counselling and looking in to ptsd. I have benefitted alot. Never in any working with psychologists or counsellors did they ever say I was depressed or anything else.

So I did the long procedure of counselling, getting finally to a psychiatrist. The psychiatrist was very concerned at my symptoms. She commended me on the work I have done (ptsd). She ruled out psychogenic/conversion/somatic and got me in to see a neurologist in a university.
The neurologist, long story short, ruled out mental, felt it was permanant post viral general muscle dystrophy (not and official diagnosis. She gave me what I asked for, some physical therapy(which almost killed me) with someone to work with and tell me what 'was' going on. It has been so beneficial to have someone explain, it has helped me understand and make changes that benefit. He and the others there I was able to work with all said they saw MS symptoms. They could not believe I am not diagnosed. I let them know ms is ruled out.
I am on pre-disability. Have seen many, the men say mental, the women say post viral, but not a real 'diagnosis'. Things were going along ok, I was getting help for the first time, ever. I was going to be fitted for a hip brace, hoping that would help me walk easier. Sadly the ones who fit for them, will not see me. They are the all in the same group, saying mental. They said if things change, I get worse, what ever, come back. They will not see me, literally.
They represented psychogenic and all the help for my symptoms has stopped. This is just crushing to me.

Why is the psychiatrists diagnosis not accepted? And the last neurologists not either.

The hardest for me is when (I refer to psychogenic/conversion as 'mental') mental is suspected, it is considered a waste of the doctors time and the tests. 'Everything is mental'. I feel I no longer have the time or the convenience to be put on hold any longer. I am no longer willing to try another antidepressant to 'see if anything goes away'. All I do is gain weight. It is hard to lose when in this shape. Then I am asked if some of my problems are from my weight! Uugh!

Well, if you have any suggestions, I would appreciate it. I am just tired of the whole thing. I really never imagined I would still be having problems this long down the road. I am getting worse. Things that use to 'subside'to a point, do not any longer.
I have done many things along the way. Diet changes, herbs, homeopathy, kinesiology, rolfing, massage, selfhelp, creative healing, hoxy clinic, aromatherapy, Mannatech, frequencies, practically everything I came across.
Physical therapy was really ******n me, even walking from the car to the office, was more than I could handle. It has taken 5 months for the hoarseness and intensity of tremors to calm down.
I look forward to any suggestions. I would love a real diagnosis so I can get help when I need it, not handed something for anexiety.

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6 Replies:

  • If you truly would love a "real" diagnosis, know that post viral fatigue is it. Please read the threads titled "The Truth About CFS/ME""CFS/ME/Morgellons/Alzheimers"and "The Truth About The Truth" I have a feeling your answers lie there.You are not alone.Read around the forum, there are many here having similar symptoms. Many have been sent to psychiatrists with no resultsWhen the docs can't figure you out, they send you to psychiatrists.That is the "catch all"....not the CFS. research "mycoplasma"...see what you come up with...wish you well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Many of the symptoms you describe in your post are classic ones associated with myesthenia gravis. As you may know this is an autoimmune disorder that attacks a neurotransmitter system involved in a specific type of muscle activation. The classic symptom of MG is the 'droopy eyelid,' But chewing, swallowing, and 'novacaine speech' are often the first or only signs depending on severity, and different muscles can be affected also, including respiratory. Symptoms can change in location and severity over time, which also seems to be your case. You mention seeing a neurologist, but do not mention being evaluated for MG. This is important, as any competent neurologist should have done tests to rule MG out - given that a fair subset of your symptoms match up. So if it hasn't been FULLY worked up (and I stress "fully" for the reasons below), based just on what I read you need to have this done, or done again. An article titled (I think this is right) "Hoofbeats of a Zebra" many, many years ago in the New Yorker magazine, described how a woman showed up to a doctor's office, and MG had been missed in her for years, because she didn't present the classic 'droopy eyelid.' or other obvious, classic MG symptoms. The doctor in this story said: "wait a minute," came back with a short-acting anticholinergic injection and -- lo and behold -- a minute later she was just like her old self from years before. You might look this story up; I believe it was reprinted later on in a book, (though this is very old memory I'm accessing.) Anyway, the moral of this in your case being: years of non- or mis-diagnosis is uncommon with mild or moderate MG. And even routine tests can miss it if the MD isn't careful. You may want to request that they test you by giving you an injection of a short-acting anticholinesterase such as edrophonium. This should be safe, simple, and unlike the other diagnostics I believe is pretty much 100% dispositive for MG. Nerve conduction tests may also be a good idea. The MG antibody test is not conclusive when symptoms are not severe. Nor are the symptoms themselves - which can vary a lot. And it sounds as though you may have other things going on which muddle the diagnosis - thyroid problems for example can interact with MG and complicate the picture. You may want to consult a rheumatologist as well as a neurologist, or a medical group that has both. A university or research / teaching center might be a good choice for your situation if you haven't already tried that route. Best wishes
    Anonymous 42789 Replies Flag this Response
  • If it turns out not to be myesthenia gravis either and you cant find any other answer.. i too suggest to look into CFS also often known as ME (when more neurological involvement is involved, thou many have now bundled CFS and ME into the same basket). Some ME symptoms below (, I had to delete a lot of them to make this fit here, below are all symptoms. My own ME, has given me very MS like symptoms at times. "Severe muscle weakness - paresis (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysisPost-exertional malaise, 'fatigue' or pain which is often delayed until 12 - 24 or even 48 hours after trivial exertion (compared to pre illness levels of activity), that can last for days, weeks or months afterward. HEARING, VESTIBULAR & SPEECH PROBLEMS Hyperacuity - an intolerance to normal sound volume and range, but particularly sounds in the higher frequencies. Sudden loud noises can also cause a startle response (flushing and a rapid heart beat) and there can also be an extreme intolerance to vibration.Tinnitus - ringing, buzzing, humming, clicking, popping and squeaking noises generated in the earHearing loss - sound can be muffled or indistinct or sound strangely flatSharp transient ear pain, deep itching in the ears and/or swelling of the nasal passagesDizziness or Vertigo - a sensation that your surroundings (or you) are spinning wildly (can cause vomiting)Acute profound ataxia (balance problems) and/or a sensitivity to motion/movement (which can affect balance)Nystagmus - a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head)The voice may become very weak, hoarse or fall to a whisper, and then there can be total loss of speechSlowed rate of speech, sometimes with stammering, stuttering, muddled or slurred speechDifficulty moving the tongue to speak and/or difficulty getting enough air to speak more than a few words at a timeIMMUNE SYSTEM PROBLEMS Painful/swollen lymph nodes especially on the neck, underarms and/or groin, particularly on the left side, and recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature)Throat pain, scratchiness and tenderness which often worsens with exercise, exertion, or before relapses. Throat may feel clogged and require constant clearing. Throat may appear red or have characteristic 'crimson crescents' around the tonsillar membranes of the upper throatIncreased susceptibility to secondary infections or a decreased susceptibility to secondary infections. (There is a tendency to catch either every virus going around or none of them)A worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to airborne allergens: pollen mould, animal dander, fur and feathers, dust. Food. Chemical sensitivities: indoor and outdoor chemical air contaminants, drugs and medications, clothing and personal care productsAllergy symptoms: Skin: pallor, itching, burning, tingling, flushing, warmth or coldness, sweating behind the neck, hives, blisters, blotches, red spots, pimples, dermatitis, eczemaEyes: blurred vision, itching, pain, watering, eyelid twitching, redness of inner angle of lower lid, drooping or swollen eyelidsEars: earache, recurring ear infections, dizziness, tinnitus, imbalanceNose: nasal discharge or congestion, sneezingMouth: dry mouth, increased salivation, stinging tongue, itching palate, toothacheThroat: tickling or clearing, difficulty swallowing Lungs: shortness of breath, air hunger, wheezing, cough, mucous or recurrent bronchial infectionsHeart: pounding or skipped heartbeats, chest tightnessGastrointestinal tract: burping, heartburn, indigestion, nausea, vomiting, abdominal pain, gas, cramping, diarrhea, constipation, mucus in stool; frequent, urgent or painful urination, bedwetting (in children)Muscular system: muscle fatigue, weakness, pain, stiffness, sorenessCentral nervous system: headache, migraine, vertigo, drowsiness, sluggishness, giddinessCognition: lack of concentration, feeling of 'separateness', forgetting words or names, anxiety, tension, panic, overactivity, restlessness, jitteriness, depression, PMSJOINT PROBLEMS Significant myalgia (pain) in joints is often widespread. The most common joints affected are knees, ankles, elbows, hips but pain in the fingers also occurs as does aching in the jointsGelling (stiffness) in the joints that develops after holding a position for awhile, usually sitting or upon awakening or be caused by changes in temperature or humidityStiff slow gait (often with legs quite wide apart) Difficulty with tandem gaitMUSCLE PROBLEMS Significant myalgia in muscles is often widespread (sharp, shooting, burning or aching pain)Transient tingling, numbness and/or burning sensations (or other odd sensations) in the face or extremities (paresthisias).There is sometimes atrophy of specific muscle groups (a shrinking in size visible to the eye)Inability to form facial expressions leading to a 'slack' facial appearance and/or a loss of ability to chew/swallowParesis - severe muscle weakness (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysisTremors and twitches of the muscles (involuntary movements), muscle spasms, which can be extremely severe and painful or there may be spasms of the hands and feet, which can lead to 'clawed' deformitiesLoss of co-ordination/clumsiness - difficulty in judging distance, placement and relative velocity (caused by proprioception disturbances, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition) Extension or quick rotation of the neck can cause dizziness (also due to proprioception disturbances)Slight hesitation in movement or 'cogwheel' effect with movementsSkin is very sensitive to the touch, there can be also be allodynia - a pain response to stimuli not usually painful and/or spontaneous bruisingSEIZURES & SEIZURE ACTIVITY Grand mal seizures (where there is loss of consciousness and motor disturbances), Petit Mal seizures - absence seizures (where you are conscious but unaware of your actions, a person may continue with an activity as though asleep) or Simple partial seizures (do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensation) can occurSensory storms/overload phenomena (hypersensitivity to light, sound, vibration, speed, odours and/or mixed sensory modalities)Myoclonus (strong involuntary jerks of the arms, legs or entire body)SKIN, HAIR & NAILS Skin: extreme pallor, rashes, dry and peeling skin, acne, spontaneous bruising, fungal infections, butterfly rash on face, flushing of face, fingerpads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (after a substantial period of illness usually).Hair: loss and poor quality regrowth.Nails: vertical ridges, bluish nail bed, brittleness, fungal infectionsSLEEP PROBLEMS Unrefreshing sleep (waking up feeling worse than when you went to bed)Reversed or chaotic diurnal sleep rhythms (ie. your body clock resets itself inappropriately)Insomnia - difficulty initiating or maintaining sleep or Hyposomnia -lack of sleepHypersomnia - excessive sleeping (common in the earlier stages of the illness only)Very light sleepUnusually vivid nightmaresDysania (morning fog)Temporary paralysis after sleeping (also called waking paralysis, can last from minutes to hours) and/or early waking states (where you are neither asleep nor awake which can last for minutes or many hours)In severe illness patients can become unconscious, comatose for up to 23, 24 hours a day (the brain becomes unable to maintain wakefulness)URINARY TRACT PROBLEMS Urinary frequency and bladder dysfunction, uncomfortable or painful/burning urination (Dysuria), difficulty passing urine or incontinence and/or nocturia (excessive urinating at night)VISION & EYE PROBLEMS Photophobia (extreme sensitivity to light). Oscillating or diminished pupillary accommodation responses with retention of reaction to lightPain or burning sensations in the eyes, floaters, spots and scratchiness in vision, sluggish focus, an inability to focus or accommodation difficulty (difficulty switching from one focus to another ) can all occur as can double, tunnel or blurred vision, night blindness and/or a transient loss of vision and/or loss of depth of field, less ability to make figure/ground distinctionsNystagmus - a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head)Tearing and dry eyeWEATHER SENSITIVITY Intolerance of extremes of hot and cold (exacerbation of symptoms during temperature (extremes). Insomnia, migraines, irritability or generally 'feeling off' a day or two before the weather changes.WEIGHT CHANGES Marked weight gain (often independent of dietary changes) or marked weight loss (often independent of dietary changes), rapid weight loss can also occur despite copious amounts of food being eaten Complied by Jodi Bassett, 2004Go to: http://www.ahummingbirdsguide.com for more ME / CFIDS info/writings or to get a properly formatted copy of this list. "
    taniaaust1 2267 Replies Flag this Response
  • Check out ILADS.org or canlyme.comI have as many others have gone this route of no diagnosis but many symptoms. Many tests, many different doctors etc..Also see others' stories on lymenet.org Flash Discussion, most posts are under Medical.Good Luck and Good Health in the future
    Anonymous 42789 Replies Flag this Response
  • Hi, I am 46, female and have been hoping for answers for over 20 yrs now. Tho I had a few symptoms (I did not realize were symptoms) as a child, like weakness when I chew. I became very ill around '85 and was left with many symptoms to deal with which I realized three years ago all increase or decrease with using my muscles. I am so tired of having to explain symptoms. Here is a basic 'list'. #The more I use my muscles, the worse I get! All symptoms increase the more I do. Literally.Tremors, hard to walk..very slow, legs have to touch down a few times to finish gait. Waddle, weakness lift arms, face pulls down on right mostly, eyelids go down-mostly right side. Lose speech, become hoarse, diffucult to breathe-especially out, a few numb toes, longer look up-eyes difficult to look up-eyelid and pull down-feel difficult to move normally especially to left, neck hard to hold head up, left hip pulls crooked and up. Weight gain, numb spot on left lip, times when pins and needles in hands and feet, Muscles pull tight in torso and fold me over if really been active. Now and then my legs totally cut out, no feeling, on the ground till they work again, usually three minutes? Memory problems, long term and short. Cognitive problems.Very heat sensitive. Heart gets worse along with everything, releived with nitro. Bladdar and bowel leak, bladdar sometimes hard to empty. Skin from jaw to collar bones will become very sensitive, along with some places on my hips an thighs. drop things, Back tight and folds me over when (trying) to walk....on and on.... gives you a picture.My original physician in Alaska suspected MG or muscular dystrophy. The neurologist he sent me to at the time said 'mental'. This shocked him. I was tested for everything. (I was never told anything I had going on was a symptom. Like not being able to lift my arms. This definitly hindered me. some doctors didn't let me explain anything unless it had been 'diagnosed'.)MRI of head showed three small spots, I am told these days are age spots. Nothing diagnostic. Same as twenty years ago.A few times, along the way, I tried to see an intern, since my liver and spleen had become so tender when it hit and thru the first year, and my liver is usually last click 'in' normal range.' Enough to flag a surgery, but not to have looked in to, I am told. Once came up positive for hepatitis, retest was not positive.(A few years after onset, I went thru a time where I was so cold, I felt if I got any colder, i would not make it. Something would drain from (? ) my head, (tho chronic sinusitis, not at this time)it smelled awful, would wake me from a dead sleep. It would run down back of my throat and sear my stomach. It made me so sick, I would throw up. When that subsided after a few months, I went thru atleast 3 months where I smelled just awful. Severe odor coming from my body. My poor family! Ha. I had to throw away all the bedding and clothes. I did not swell quite as much after that happened. )Well, I dared to try the doctors again 4 years ago. Alot of drama led me to a neurologist who blew raspberries in my face and wrote a report I am obcessing so much I am making myself have symptoms. (quite the opposite, I run on water trying not to have them) I demanded then to have his diagnosing " psychogenic/conversion/somatic' ruled either way. I do not believe you can diagnose that in one visit. I would accept it from a 'professional'. (there were extenuationg circumstances at that visit I have no doubt contributed to his ridiculous behavior)So many doctors tell you what you don't have! Big deal, tell me what I have. If you think something mental, do it dignified and to help me.On my own I have done alot of counselling and looking in to ptsd. I have benefitted alot. Never in any working with psychologists or counsellors did they ever say I was depressed or anything else.So I did the long procedure of counselling, getting finally to a psychiatrist. The psychiatrist was very concerned at my symptoms. She commended me on the work I have done (ptsd). She ruled out psychogenic/conversion/somatic and got me in to see a neurologist in a university.The neurologist, long story short, ruled out mental, felt it was permanant post viral general muscle dystrophy (not and official diagnosis. She gave me what I asked for, some physical therapy(which almost killed me) with someone to work with and tell me what 'was' going on. It has been so beneficial to have someone explain, it has helped me understand and make changes that benefit. He and the others there I was able to work with all said they saw MS symptoms. They could not believe I am not diagnosed. I let them know ms is ruled out.I am on pre-disability. Have seen many, the men say mental, the women say post viral, but not a real 'diagnosis'. Things were going along ok, I was getting help for the first time, ever. I was going to be fitted for a hip brace, hoping that would help me walk easier. Sadly the ones who fit for them, will not see me. They are the all in the same group, saying mental. They said if things change, I get worse, what ever, come back. They will not see me, literally. They represented psychogenic and all the help for my symptoms has stopped. This is just crushing to me. Why is the psychiatrists diagnosis not accepted? And the last neurologists not either. The hardest for me is when (I refer to psychogenic/conversion as 'mental') mental is suspected, it is considered a waste of the doctors time and the tests. 'Everything is mental'. I feel I no longer have the time or the convenience to be put on hold any longer. I am no longer willing to try another antidepressant to 'see if anything goes away'. All I do is gain weight. It is hard to lose when in this shape. Then I am asked if some of my problems are from my weight! Uugh! Well, if you have any suggestions, I would appreciate it. I am just tired of the whole thing. I really never imagined I would still be having problems this long down the road. I am getting worse. Things that use to 'subside'to a point, do not any longer. I have done many things along the way. Diet changes, herbs, homeopathy, kinesiology, rolfing, massage, selfhelp, creative healing, hoxy clinic, aromatherapy, Mannatech, frequencies, practically everything I came across. Physical therapy was really ******n me, even walking from the car to the office, was more than I could handle. It has taken 5 months for the hoarseness and intensity of tremors to calm down. I look forward to any suggestions. I would love a real diagnosis so I can get help when I need it, not handed something for anexiety. im not even a doctor and 6 sentences int6o your post i knew it wasw mms. they are stupid!!!
    lavail 4 Replies
    • October 18, 2013
    • 05:25 AM
    • 0
    Flag this Response
  • Hi - just seeing this post now. Did you ever find any relief? Did you have your b-12 level tested? I have all of your same symptoms, have dealt with the 'it's not MS, it's in your head' doctors. I ended up in the ER Jan 5 2016 after painful burning in toes/feet/hands/fingers got so bad over 12 hrs that i could not walk and was barely conscious. I've started on b-12 replacement (i take a ppi - pantoprazole for barrett's espophagus which interferes with b-12 absorption) and have more energy now. Day 20 and I've got a ways to go, but better than I was 20 days ago. Facebook has a support group 'Pernicious Anemia/B12 deficiency' and i've found alot of good info there. Best wishes / Brendan
    Anonymous 1 Replies
    • February 15, 2016
    • 06:26 PM
    • 0
    Flag this Response
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