Discussions By Condition: I cannot get a diagnosis.

Please Help! Muscle Weakness

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: sondraspalding
  • April 24, 2008
  • 00:34 AM

Hi all. Please forgive me if I ramble on as I am new at this and feeling like I am going insane at the moment from trying to deal with the docs. Back in October I woke up one day with extreme muscle weakness in my legs that got worse as the day went on. For the first couple of weeks the weakness got worse until I could barely walk. I also had what I guess you could call a rash on my chest, shoulders, and neck that looked and felt like sunburn. I was extremely sensitive to touch. The rash isnt as bad and I'm not as sensitive but I still get really red in those areas. I have gotten better at walking but my legs still don't always want to work and I can only walk for short distances before they quit on me. I can barely climb the stairs to go to bed and the fatigue is almost unbearable. I have had to cut back to part time at work partly because of that and partly because I have trouble driving anything but short distances anymore. I have to take breaks if I drive for too long because my legs start shaking. I also have weakness in my shoulder area though it doesn't appear to be as bad (of course I don't use my shoulders as much as my legs.) I have trouble with my memory and sometimes with things like remmebering words. I have had so many tests run it is crazy and most of them have apparently been normal - including MRIs, a ton of labs, chest xrays, thyroid tests, etc. The ones that are abnormal have been my white blood cells (high for the past 5 years), infection scan that found some enlarged lymph nodes and CT scan that confirmed, an immuoglobulin test that showed low IGM and IGA. I have had 3 EMG/NVC tests done (one showed polyneuropathy, one was normal, and the last one said there was nothing wrong with the muscles and nerves but he saw decreased muscle activation.) I have been to so many specialists and they cant seem to agree on anything - most of the time they contradict each other, even in the same field - hence the 3 EMG/NVC tests. I was diagnosed with Fibromyalgia in May which they say this isn't related to and some docs hav even said may have been incorrect. I also started having problems with one of my knees that they just did an MRI on - doctor said that showed arthritis and bone loss due to loss of blood circulation but that it wasn't related. I have had one doctor tell me I should give up and just accept they don't know what is wrong with me but I can't do that. I can accept anything at this point but that we don't know. Right now I barely do anything other that sitting around my house becasue it is so difficult to walk or drive anywhere. Please tell me that someone else knows what I am going through and can hopefully offer some advise. As far as I can tell they have tested for all the usual stuff such as MS. One doc told me I either have an unusual condition or a common one presenting unusually - not a whole lot of help. Sorry to keep rambling but I dont really know what to do anymore - especially with everyone telling me not to get stressed about it because stress seems to make me worse.

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12 Replies:

  • You sound alot like me. I have muscle weakness, an elevated wbcc (for 3 years now) and degeneration in my back. I am also very fatigued and unable to stay awake most days. Some days I feel like I have more energy then others, but If I try to do any kind of exertion (take a short walk or do some cleaning at home) I feel like I ran a marathon afterwards and I have no energy at all. Sometimes the muscle fatigued feeling can last for weeks or months on end afterwards. Then again I can also get this way for no reason at all... Like you I have had loads of tests and they have found a few things. I am hypothyroid and I have high blood pressure, but nothing that explains why I feel the way I do. Sorry I can't be of more help. Just wanted to let you know that I know how you feel! Stay strong! Kiera
    Anonymous 42,789 Replies Flag this Response
  • Thyroid conditions can be tricky: Make sure your numbers of FT4, FT3 and TSH fall in the ranges suggested by the American Association of Clinical Endocrinologist: TSH of 0.3-3.0 (some say 2.5) and FT4 in the mid range of the lab ranges and FT3 in the upper 1/3 of the lab ranges....and make sure you are tested for the antibodies of the autoimmune thryoid diseased Hashimotos and Graves disease and research thryoid if you suspect it.....it can be very tricky and effect every cell in your body. Fibromyalgia and hypothryoidism are often seen together and there have been studies that treating the thryoid problem a little more agressiviely and precisely has also helped the Fibromyalgia symptoms as well....some doctors seriously suggest connection between the two. Some patients find that once the thryoid is give more attention, Fibromyalgia symptoms also improve. You might want to condisder seeing an DO doctor who as you know is medically trained, but also more holistic and may be able to help you deal with total body issues and find your way back to health.....here is a good definition of DO here: http://www.nlm.nih.gov/medlineplus/ency/article/002020.htmat AT least is may be worth it to talk to one or two...interview them! Joan
    Joan5555 316 Replies Flag this Response
  • As one who has fibro herself and is involved with fibro support groups etc, Im going to say that I think there is a definate possiblity that you dont have fibromyalgia. I'll provide info here..so you can work out for yourself if you possibly have fibro or not Fibro usually will affect much more of the body with pain other than just the knees (and you mentioned your shoulder at times). With the degree your knees are affected, if it was fibro, i'd then expect you to be getting pain flares in many other body parts too. Thou weakness is there in fibro.. the dominant symptom in fibro usually pain. Before the diagnoses was fibro was given.. were the fibro tender points checked under a certain amount of pressure? (fibro pain flares at certain points).. (some doctors due to their lack of knowledge, will just give a patient a fibromyalgia diagnosis based on just some body pain which they just cant explain, just cause they want to give out some kind of diagnoses!!!..but certain diagnostic criteria is out there. Most doctors do not know much about fibromyalgia http://www.immunesupport.com/library/showarticle.cfm?id=112&t=CFIDS_FM) "Diagnostic Criteria For FibromyalgiaA doctor familiar with fibromyalgia, however, can make a diagnosis based on two criteria established by the American College of Rheumatology:a history of widespread pain lasting more than 3 months the presence of tender points Pain is considered to be widespread when it affects all four quadrants of the body; that is, you must have pain in both your right and left sides as well as above and below the waist to be diagnosed with fibromyalgia. Fibromyalgia Tender PointsThe American College of Rheumatology also has designated 18 sites on the body as possible tender points. For a fibromyalgia diagnosis, a person must have 11 or more tender points. One of these predesignated sites is considered a true tender point only if the person feels pain upon the application of 4 kilograms of pressure to the site. People who have fibromyalgia certainly may feel pain at other sites, too, but those 18 standard possible sites on the body are the criteria used for classification." of cause i do think one could still have mild fibro..but not have the 11 or more tender points they have set (these may not be painfully noticable except when pressed) but that does give one more of an idea if fibro is a possiblity or not as one would expect to have at least some of them if one has fibro.. for diagram of the specific points they are at http://www.immunesupport.com/fibromyalgia-tenderpoints.htm With the knee tender point.. i find its just where diagram says.. when Fibro is flaring.. I will have to sleep with pillow in between my knees due to I cant bear to have my knees together as it presses on the fibro tender point..as it flares at the inner knee area i highly recommend you to check out too the fibro screening quiz too as it will help you understand fibro a lot more and work things out http://arthritis.about.com/od/fibromyalgia/l/blfibroquiz.htm I hope this has all has helped you sort out if you may have Fibromyalgia or not.
    taniaaust1 2,267 Replies Flag this Response
  • Many of your symptoms sound like chronic fatigue immunity dysfunction syndrome (CFIDS) also called chronic fatigue syndrome. http://wwcoco.com/cfids/bernesx.html (for full list of symtoms and the percentage of CFIDS people who get them) With that.. ones body parts tire very very fast eg this tiring can present aas weakness and one needs to have frequent rests. It also affects ones memory etc. Ones with CFIDS can get a huge whole range of different symptoms.. but CFIDS always hugely affects ones life (one has to cut back on work etc etc due to the symptoms. A quarter of CFIDS patients are bad enough to be housebound or bedbound by the symptoms). I have had so many tests run it is crazy and most of them have apparently been normal - including MRIs, a ton of labs, chest xrays, thyroid tests, etc. The ones that are abnormal have been my white blood cells (high for the past 5 years), infection scan that found some enlarged lymph nodes People with CFIDS are prone to infections, rashes etc .................................... Im not sure if you have CFIDS or not by what you said.. but it should be a possibility that you are looking at due to your symptoms. (If you have CFIDS.. you may end up needing to be on disability etc). The way I describe CFIDS (i have this too).. is that it's like having a cross between MS/parkinsons diease/epilepsy/flu and Alzheimer's disease but each CFIDS patient gets it to different degrees and a different range of symptoms. Thou diagnosis of CFIDS is based on ones symptoms.. there are scientific tests in which abnormalities are often found in CFIDS patients which can help point to that CFIDS is the right diagnoses. Some tests which can help point to CFIDS are Romberg test (which can show Central nervous system issue many with CFIDS have) cortisol tests (abnormal..low morning cortisol levels or adrenals malfunctioning..is fairly normal in CFIDS). SPECT scans (but the doctor needs to know what to look for in CFIDS.. but they often reveal lower blood flow than normal) qEEG brain topography (often will show elevated activity in theta and beta) (if you have this abnormality thou and are on medications, doctors who dont know it's relevance will dismiss abnormality as a medication reaction)etc etc etc So if you have CFIDS.. one really needs to go and see a doctor or specialist.. who specialises in this illness and who sees many CFIDS patients to make sure one is probably getting the right diagnoses (and not being thrown into this catagory just cause a doctor cant work the illness out)................. anyway..as i said, i dont know if that is your medical problem or not.. but is something you certainly should look into.
    taniaaust1 2,267 Replies Flag this Response
  • Have they checked for dermatomyositis? I'm sorry you are getting the run around. If it makes you feel any better, it took me 8 neurologists to get diagnosed. Ultimately, it was for me a movement disorder subspecialist, but I'm thinking for you it might be a peripheral neuropathy subspecialist or something similar. Is there a neurologist you have more confidence in than the others? Perhaps you can ask if they would suggest an appropriate subspecialist. Tell them that you really need an answer and that this is all very disabling.One thing that will help is to keep a sheet with a summary of all your past labs and studies and their findings- including the normal ranges for the labs. This might help speed up a diagnosis and prevent repeat unnecessary testing.Best wishes and hope you get answers soon.
    Anonymous 42,789 Replies Flag this Response
  • Hi everyone, First I want to thank everyone for their input. It is wonderful to know that others are or have experienced this too and are making it through. Also the advice was very helpful. I also wanted to try to answer some of the questions you posed here. 1) FM - When I was diagnosed it was because of the pain that I had been experiencing for quite some time and they did do the tender point test on me. Ironically, the pain lessened once the weakness started. I was inclined to agree with that diagnosis when it was made and still think it is possible that I have FM combined with something else. I am suspect that the doctors who claim possible misdiagnosis are also the ones who think FM is all in the head, but I am trying to not rule anything out at this point. 2)Dermatomyositis - I brought this up to a few of the specialists I have seen especially with the rash and such but was pretty much blown off. Update: I spoke with the neuromuscular specialist who ran my 3rd EMG/NVC test and he said that it appears my muscles and nerves are fine in my legs and arms. However, he said the decreased muscle activation shows that either the signal to the muscles isnt strong enough or that it is getting there too late. Unfortunately, it also appears to mean its not his area of speciality so onward to another doc. The frustrating thing is that I also got an email from the Physical Medicine specialist who referred me to him and he said the report he got said that there was nothing wrong so he doesn't know what could be going on. I have a follow up with him next week to discuss but who knows where that will go. I sent him an email and told him that wasn't what I had been told and he responded that he could only go by what was in the report he received. This is the part that is the most frustrating - every time I talk to a doctor I get a different response. My husband is convinced that my HMO is playing games and wants to go to someone of our choosing now but at this point I don't even know what kind of doctor to go to. If anyone has any suggestions about that I would definately appreciate them. Thanks again for all the wonderful responsees.
    sondraspalding 3 Replies Flag this Response
  • Couple more test results - which they are telling me aren't related. Why do they run all these tests if they are going to tell you the results aren't related to what you are going through? Anyway, 1) My cholesterol is still high (or low depending) but they already knew that. My rhemy had me quit taking my cholesterol meds months ago because she said they could be causing the problem. So no suprise that it's up. My total was 251, my trigs were 320, and my HDL was 31. 2) My liver function test came back with some abnormalities but they think that is because of my high cholestorol - my ALT was 55 and my alkaline phosphate was 150. 3) They ran the Epstein Barr test and the capsid IGG came back at 3.81 and the nucleur IGG came back at 4.59 which they said meant I had an infection in the past but that it's not affecting me now. I dont think I mentioned it earlier but I also have high blood pressure, IBS, and asthma. All diagnosed within the past year to year and a half. Up until then I had always been a pretty healthy person now it seems like they just keep finding new things except the one answer I am looking for. I have an appointments with hematology and physical medicine next week so maybe they will have some answers.
    sondraspalding 3 Replies Flag this Response
  • Kiera, Thanks so much for your response. Yes we do sound like we have a lot in common. Your post summed up my life right now. Especially about the exertion. My husband gets on my all the time about trying to do things on the rare days I feel like I have some energy because I will pay for it afterwards. But up until this I had always been a very active person and find it difficult to not do anything so when I do feel like maybe I can, I want to. I'm sure you can relate to that. Thanks again for your post. Maybe if one of us could get an answer it could help the other. :)
    sondraspalding 3 Replies Flag this Response
  • 2) My liver function test came back with some abnormalities but they think that is because of my high cholestorol - my ALT was 55 and my alkaline phosphate was 150. I dont think I mentioned it earlier but I also have high blood pressure, IBS, and asthma. All diagnosed within the past year to year and a half. Up until then I had always been a pretty healthy person now it seems like they just keep finding new things except the one answer I am looking for. I have an appointments with hematology and physical medicine next week so maybe they will have some answers. liver abnormalities often can show up in people with CFIDS.. and IBS is extremely common in CFIDS (50-90% with CFIDS have IBS) .. http://wwcoco.com/cfids/bernesx.html high blood pressure is rare in CFIDS (2% of cases only) , the rest usually have low BP.. but I have CFIDS my blood pressure gets very very high at times eg 157/138 (but then it drops during night to normal and low range.. if doctors hadnt done 24 hr monitoring. i would of been diagnosed with high BP) . (with CFIDS there is autonomic nervous system dysfunction which causes abnormal BP). Did your high BP get diagnosed just by it being taken during doctors visits??? (in many it will go up during doctors visit.. called "white coat syndrome" and can get misdiagnosed as being high BP) or did you wear a 24 hr monitor and get it diagnosed? (just trying to give you all the facts to better inform you..)i hope you get the answers you need. (if doctors cant work it out.. to find a CFS specialist.. the best way is to find a local or your states, CFS organisation or group..and ask people there to recommend doctors).
    taniaaust1 2,267 Replies Flag this Response
  • This is really wierd: I dont think I mentioned it earlier but I also have high blood pressure, IBS, and asthma. All diagnosed within the past year to year and a half. Up until then I had always been a pretty healthy person now it seems like they just keep finding new things except the one answer I am looking for. I have an appointments with hematology and physical medicine next week so maybe they will have some answers. I have also been diagnosed with these things in the past 2 years: High blood pressure, Astma (even tho I have had problems on and off for years), No IBS... but Colitis!, and like you they all showed up after getting sick about 2 years ago. Well, we do have more then one thing in common anyhow... This is my story: About 3 years ago I got real sick with a flu-like illness. My liverpanel came back elevated, but even tho tests did not show active epstien barr, I was diagnosed with it. My muscles ached and I had diarreah and nausea. It subsided after 2 weeks. During the next year I started having bouts of fatigue, that would hit me bad every afternoon and night but worst on friday nights after work. I also noticed that I had excessive yawning. Then one day in June I started having bowel problems. At my worst, I was visiting the toilet 19 -20 times a day. They found no inflammation in my feces, but my white blood cell count was elevated. I was admitted into the hospital and they found ulcers in my colon. I was told that it was Ulcerative Colitis or even Crohns disease. The diarreah got better (not normal bowels tho), but the fatiuge would not let go. I would go into what I called zombie mode. I didn't even have energy to talk when it hit me. I would just stumble into bed and sleep for hours. I would aslo have very sore feet after sitting as well as weakness in my legs and arms. If I tried to hang up clothes it felt like I had done a full work out. I talked to the doctor about it and thats when she did my thyroid panel. It came back slightly high and I was put on medicine. Unfortunatley it only helped the "zombie mode". I no longer had the staring fits with no energy to answer a question, but the muscle weakness stayed around with the other stuff. She took my blood pressure to, and for the first time in my life I had high blood pressure. I was put on meds after 2 months. I was also having consentration problems and I would do the wierdest things. I would forget things and life was starting to get me down. I developed small dry patches on my stomach, thighs and lower back. I also had what looked like pimples on my back. They itch intensely. They come and go. After a while I started having migrating joint pains as well as back pain. Three toes on my right foot felt numb and I had an electrical feeling when I touched them, so they did a MRI of my head, neck and lower back. That showed degeneration in both neck and back, but I was told that it was NOT the cause of my problems. My head was normal (ha ha, who would have guessed) I have had 3 UTI/kidney infections in the past 2 years. I have tendonitis in my elbow and shoulders and I have unexplained nausea that pops up out of nowhere. I also have pain under my ribcage. (upper right quadrant) I have seen an endo, rhumey and a GI. I am currently waiting to see a neurologist. So... I guess you see my point. We have lots in common. I will keep you posted if anything turns up, and hope you do the same. Kiera PS. Elevated cholesterol levels are seen in hypothyroidism. You should ask for a copy of your results if you had a panel done. Post them here and I will look at them. Not all doctors tell you that you have an elevated level, since most doctors use 10 as an upper referance for TSH. Mine was only 3.8 with a upper range of 3. They say that anything over 3 is suspicious.
    Anonymous 42,789 Replies Flag this Response
  • Forgot to mention that I also have dry eye, mouth, vagina and my nipples itch. I've been tested for breast cancer and Sjogrens syndrome.
    Anonymous 42,789 Replies Flag this Response
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  • It sounds like CFS to me. Muscle pain/weakness (and joint pain) are just fallouts from an infectious etiology. Memory issues, brain fog, enlarged lymph glands are signs of CFS. I would reference the NIH or CDC websites about CFS and try to find an alternative-minded doctor that can help you address these issues from a naturopathic way rather than quenching all the side-effects of CFS with drugs. Muscle weakness might be helped with magnesium (do not use magnesium oxide) supplementation and anti-oxidants. Try magnesium and dietary changes, trying to get good whole foods like organic fresh fruits and vegetables, whole grains etc. Your condition is also know as Adrenal Fatigue.
    LINENUP 122 Replies Flag this Response
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