Discussions By Condition: I cannot get a diagnosis.

Fatigue and muscle weakness-please help

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: Anonymous
  • April 7, 2007
  • 05:51 PM

Apologies beforehand for my English, I live in Greece. I am wondering whether somebody could relate with me or have a different perspective on what I have been going through for the last month and a half.
I used to smoke a lot and drink a lot of coffee on a daily basis (around 6 cups of nescafe), mainly due to my work which is very demanding and stressful. Two months ago, after having a coffee in the morning, I developed tachycardia and went to the hospital because of a feeling that resembled a panic attack. The cardiologist who examined me told me to quit immediately smoking and drinking coffee and put me on a beta blocker pill (Inderal) for 2 weeks. After a week or so, I started feeling really tired and drained, to the extent that I could not walk for 10 minutes. I went to the hospital again and was told that it was either the pill which can have such side effects, or I was experiencing withdrawal symptoms from nicotine and caffeine. The doctor switched my medication but the symptoms remained and got even worse. There were days that I was so weak, that I could not get out of bed or go to the bathroom. As this thing would not go away, I was admitted to the hospital for a thorough check up. As I am 32 and up to now quite healthy with no medical conditions or problems, my physician was quite alarmed that the fatique would not go away.
In the hospital I had all sorts of tests (half of them I cannot even translate!!!), including all sorts of blood tests (they revealed no anemias, no problems with the thyroid, no diabetes, no deficiencies in nutrients, no HIV or hepatitis and other related diseases), on the whole, my exams were so good I could not believe it. I had also a chest x-ray, a chest and abdomen cat scan, a thoracic puncture and a myelogram, a stomach examination and a biopsy, a heart ultrasound, I wore a Holter device for a day- they were all clean. My virological tests revealed that I had a type of a gland virus (something like mono) and while I was in the hospital, I was also diagnosed with a "subclinical" form of the Marfam syndrome, due to the fact that I have long fingers (a minor form of arachnodachtylia) and a high palate-my heart ultrasound revealed no problems and I was told by the doctors that I have nothing to worry about, that it is a very minor form of the syndrome. The only advice I got re. the Marfan syndrome is to have a heart ultrasound every year, to follow up the condition of my aorta. I researched the syndrome a little bit on the Internet and found it quite alarming, but this contradicts what my doctors told me about the form (subclinical) of the syndrome that I have. I don't know whether I should leave it at this or start looking into it into more depth, maybe do some genetic testing.
Anyways, almost a month and a half after my first symptoms, I am still on a sick leave and find it quite difficult to function on an everyday basis. I rarely get out of the house (still get tired very easily) and I find this whole thing very disturbing, as I am a very active and social person, nothing like this has ever happenned to me before. I have become very moody and irritable, but I associate that with the overall feeling of weakness and being at home, which makes me feel completely incompetent. So far, the doctors have come up with the following possible scenarios:

1. Potential chronic fatique syndrome
2. Fatigue due to the gland virus that I have, that needs to do its "cycle"-apparently there is no cure
3. Psychosomatic causes due to the extreme stress and deadlines that I usually go through at work
4. Withdrawal symptoms (caffeine and nicotine)

I feel better on the whole, but I feel weak at the knees and I feel the same weakness in my leg muscles. Could this be from spending so much time in bed? I occasionally have an upset stomach, too and occasionally I feel sleepy and lethargic, like my brain functions on the 1/10 of its potential. I have one weak filter coffee per day and smoke 3-4 cigarettes. I can't walk long distances and I am really frustrated because nobody seems to be giving me a concrete answer re. what's wrong, people are treating me a little bit in the sense "hey, get a grip, there's nothing wrong with you, your mind is just playing tricks on you". To be honest, I highly doubt that. One typical symptom of the Marfan syndrome is also leg weakness, so I am really perplexed that not a single doctor of mine seems to be making that association. They probably know better than I do. What the hospital neurologist told me is to come back after a month or so if the symptoms persist in order to have some more neurological and brain/sleep tests. What do you think I should do from now on? Assume that it's the virus and wait? Do some more tests? See a psychiatrist or a psychologist to see whether this is something I am causing to myself? I just want a normal life back, I can't be on a sick leave forever!
Any ideas, anybody? Should I listen to what the doctors say or should I go with my gut feeling??? Thank you all for listening & Happy Easter!

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18 Replies:

  • Lenna from Greece... go to www.ahummingbirdsguide.com on home page to L is symptoms page, click it...at end of first paragraph is link for summary of symptoms...write down as many as you have...all of the ones you are listing are there...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Clearly you have much better doctors than the poor Americans! Yet still they don't know .. Please read:http://forums.wrongdiagnosis.com/showthread.php?t=12933andhttp://forums.wrongdiagnosis.com/showthread.php?t=9052 Long threads - not exactly your case but the answers are sooo relevant.
    Curly Stooge 319 Replies Flag this Response
  • Dear mommy cat, I have been away from this forum for quite a while because I have made a conscious decision not to spend most of my time talking and thinking disease. From my experience, getting so much involved with dissecting your condition almost as a sole reason for one’s existence can take you to dangerous paths or even make you obsessed with it to a point that it’s not healthy anymore (that’s quite ironic). I admit that I myself have indulged and this created more problems that it actually solved. Fighting an unknown condition can be scary on its own without somebody telling you that you will be in this state for a very, very long time. Mommy cat, don’t underestimate the power of suggestion or self fulfilling prophecy when it comes to people battling “grey” medical conditions, which not even doctors can diagnose. If you insist on telling people that most of them have CFS there is a good possibility that many of them will believe you even if they don’t have it or even create some of the symptoms just to affirm the diagnosis. The human brain works in mysterious ways. I am not denying the existence of the syndrome, yet it is not the answer for every medical condition presented in this forum. I know you mean well, but it is like putting people on a really bad trip, like giving them a sentence for life or at least for many years to come. A good psychological condition is a key factor for recovery, but this bleak prospect does not help very much and can undoubtedly lead to depression and a sense of futility. Anyways, I wish you people all the best, speedy recovery and thank everybody once more for the time you took in getting back to me.
    Anonymous 42789 Replies Flag this Response
  • Dear Lenna, you would rather everyone be "uninformed" of a possibility of diagnosis, that their symptoms fit?. People are here asking for help. Many are having CFS symptoms. I'm not telling anyone they have it. Just that it is a possibility. There is a lot more going on than what you see and my work here has nothing to do with any self-fufilling prophecy.Hope you are well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Lenna.. it sounds as if you have great doctors there who are trying to cover all possiblities. Im happy there for you. "1. Potential chronic fatique syndrome2. Fatigue due to the gland virus that I have, that needs to do its "cycle"-apparently there is no cure3. Psychosomatic causes due to the extreme stress and deadlines that I usually go through at work4. Withdrawal symptoms (caffeine and nicotine)" As your problem started right after being put onto drugs for the tachycardia (which may of been caused by too much coffee??), I wonder if you are still getting a drug reaction of some kind to that kind of drugs. Maybe you are getting reactions to all those drugs you have tried to take since??????? I just wanted to put this possibility to you. It may be good to speak to your doctor to ask if you could go off of the drugs for a couple of weeks just to be certain that you aint reacting to your drugs (that way you can be sure). Also maybe the cutting back on the coffee has fixed the tachycardia problem????? As far as CFS/ME goes.. DONT WORRY about that at all unless you still have that problem in 3-4 mths time and still havent been able to find out what is wrong. CFS/ME can cause your symptoms and can start out suddenly like your problem has (and doctors finding a gland virus of some kind? fits into the CFS picture too), but it is WAY too early to go thinking that you may have that illness. I strongly suggest that you seek out a CFS/ME specialist in 3 mths time if you still have the condition and havent worked it out by then. In the meantime.. i really suggest that you try to get your doctors to agree for you to try going off the drugs for a couple of weeks.. to see if that makes a difference to your symptoms. And dont stress but just wait and see.. time is going to show more what your problem may be...and stressing wont help. All the best to you. ps.. i think you are doing the right thing to be researching the other condition they say you have.. if your symptoms fit.. maybe they are caused by that. I also suggest the genetic testing to back up what the doctors say (if it is available for that) just to be SURE.
    taniaaust1 2267 Replies Flag this Response
  • Dear Lenna, you would rather everyone be "uninformed" of a possibility of diagnosis, that their symptoms fit?. People are here asking for help. Many are having CFS symptoms. I'm not telling anyone they have it. Just that it is a possibility. There is a lot more going on than what you see and my work here has nothing to do with any self-fufilling prophecy.Hope you are well...mommy cat mommy cat.. but stress is harmful in many conditions and hence to those who dont have CFS/ME and its doubtful they have, you are doing them harm. Consider those with depression or anxiety problems too.. these problems can cause all kinds of symptoms. My own sister had depression and actually thought she had what i had cause she had quite a few of the symptoms I get with the CFS/ME.. eg body aches and pains, couldnt sleep, chest pains at night, panic attacks, headaches, tired all the time and sleeping a lot. All her problem was was depression and anxiety. I spent so much time telling her, thou it appeared she may be getting CFS/ME and of cause there is a genetic link too (my cousin and uncle are also on disability along with i).. I kept on telling her it was very very important she discounted this idea at first and looked at ALL other possibilities first. So she did and the doctors thought it was anxiety and depression, thou she didnt think it was (she was convinced she had CFS/ME). She thou found out only after she started taking antidepressents.. that all her symptoms went away. The doctors were right.. it WAS anxiety and depression. On the anti depressents, she's now feeling normal and all symptoms are gone. Had she come to this site..You would of further convinced her she had CFS/ME and caused her stress to worsen and made her whole condition much much worst!! Due to this I say You are probably HARMING people at times.. One needs to look at the persons WHOLE picture before go saying they probably have CFS eg history, time they've had the illness, what tests they already have had done etc.. along with the symptoms. You cant tell a person they have CFS if they have only had symptoms for a week or two (ive seen you do that). "you would rather everyone be "uninformed" of a possibility of diagnosis, that their symptoms fit?. " but there is no possiblity of Lena thou getting diagnosed of CFS/ME at this point as CFS is an illness which dont at all last for a short time, (needs to be present for 6 mths before CFS/ME diagnoses can be thought about).. someone with an illness for 2 mths such as Lena has.. the odds are she hasnt got CFS but something else. Of cause there is also the possibility of CFS too.. but her doctors ARE already onto that obviously..so why go stressing her out further????????? I honestly think you have issues momma cat over the fact they took so long to diagnose you??? (that's a guess..as i dont know your history). I know you are are wanting to help others..but you are scaring so many people unneedlessly and as i said...could actually be doing harm to others with other illnesses. I hope i havent offended you with my post.
    taniaaust1 2267 Replies Flag this Response
  • I agree, Caffeine withdrawls can make you extremely tired for 2-3 weeks. And beta-blockers and related drugs can make you real tired.
    Anonymous 42789 Replies Flag this Response
  • How about one cup of coffee a day??? See if that makes you feel better. You could have anything, but sounds like too much coffee and smoking and stress. Try modifying your diet and eating healthier with more veggies and fruit. Try meditation or hypnosis for relaxing...or bio-feedback.
    Monsterlove 2921 Replies Flag this Response
  • Dear mommy cat,I did not intend to be offensive and as I already said, I am not one of the people who do not believe in the existence of CFS- from day one, my GP indicated that it might be it (so apparently, he considers it to be a real illness), yet that would be the diagnosis by exclusion after 6 months, as it usually happens. When I asked him what will happen if I have it, he told me to forget it and that we will get back to it if my symptoms persist after 6 months. I now appreciate the way he handled it and assume the responsibility for getting so deep into research, that I actually got lost in it. I am sure that I am not the only one. You see the problem with CFS and the work you do is that when you invite somebody to visit the symptoms page, the spectrum of symptoms is so diverse and wide, that it covers most of the diseases that I know. I didn’t mean to be offensive, yet I think that your approach is slightly aggressive, even now when you get back to my post. Of course I don’t think that people should remain uninformed and as I want to believe that I am an intelligent human being, I also comprehend that people come to the forum for help, after all this is the reason why I came to it and I remain grateful to the people who took time and tried to help. I strongly believe that our mind can heal us or even make us sick and I know people who might hear a discussion about brain tumors only to develop immediately a headache as a result. Dear taniaaust1,Thank you for your post. I am really grateful to the entire team of doctors, interns and nurses cause I know they did everything possible to help. I was hospitalized for 15 days and I did not have to ask for anything-all the tests and examinations were done on their own initiative and trust me, it was a lot of them! And that was in a public University hospital and I didn’t have to pay a single Euro! I know that people complain about the Greek health system and I see that many people complain about the health system in the States (I guess that Dr House is a mythic persona lol), but what makes me wonder is that when people can afford it and have serious health problems, they usually go to the States from here, so this is a quite interesting paradox!The doctors stopped my beta blockers immediately, cause they thought that they were the root of the problem. The reason I was hospitalized was because the extreme fatigue did not go away after that. I don’t take the pills anymore and have reduced significantly my caffeine and nicotine intake and the tachycardia is gone since then. As far as the Marfan’s syndrome is concerned, all my tests came back negative, so that is a huge relief.So far my official diagnosis is the gland virus and I believe that I am recovering. I am back to work and I function properly, I still take it easy, but people around me tell me I am brand new. Maybe it was just a combination of factors and a burn out induced by my hectic life, bad nutrition, smoking, stress etc. I must admit that despite the fact that I used to scorn antidepressants, I am now on them. Being in bed for such a long time and being diagnosed with Marfan’s at the same time did it for me. I will be taking them until I get back on my feet 100%. Also, I am on a healthy diet, a lot of fruits and vegetables, I take Omega 3, 6 ,9 supplements (which by the way are great), no alcohol, one cup of filter coffee per day, Yoga and Pilates and a lot of swimming in the sea and sunbathing under the Greek sun (which is equally great!). And of course, I am taking it easy, which is probably the key to well being and health anyway!!!I wish you all the best and thanx once more!
    Anonymous 42789 Replies Flag this Response
  • Hyperparathyroidism? Elevated calcium in blood? Re Marfan's...be extremely careful if you become pregnant. Aortic problems could be life threatening. Yes, genetic testing might help.
    rad-skw 1605 Replies Flag this Response
  • Dear rad-skw,Thank you. All my blood work (and I had a lot of it done) came back within the limits of “normal”. Only my virological exams have shown the gland virus. Re. the Marfan’s, I am well aware of the dangers. I did not do the genetic testing after all, yet all my other related exams came back ok. I had three detailed heart ultrasounds and was seen by 3 cardiologists and none of them found any alterations related to it. That was a huge relief. Apparently I don’t have it after all-but as a precaution, just to be sure, I will have a heart ultrasound once a year.
    Anonymous 42789 Replies Flag this Response
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  • Lenna, your English is very elegant and precise. Your reply to MC, while courteous, was exactly correct and much-needed. Her insistance that CFS is the reason for EVERYTHING is in itself tiresome. But, we are all guilty of listing the most horrible possibilities. I myself have mentioned dengue fever and bubonic plague! But "Wrong Diagnosis" is all about the saying that docs learn, "if you hear hoofbeats, don't think zebras", meaning don't automatically go with the exotic diagnosis, but rather go with the most common explanation. So the docs have diagnosed "horses, not zebras" We on this board like to suggest zebras (or CFS). It is our hope not to scare anyone. But if we see "thirst and hunger", then hopefully we'll direct that person to a diabetic doctor quickly before any damage is done. And yes MC, I know that diabetes is a symptom of CFS.
    rad-skw 1605 Replies Flag this Response
  • Dear rad-skwI am totally with you and I know that people in this forum are fighting much more serious diseases and many of them are trying to see what’s wrong with them for years, yet still I believe that CFS is used as an excuse for almost everything. I myself have learnt a lot about it – in the beginning I thought it was just a form of extreme burn out and had no idea that it can have a viral background. As many people I suppose, I thought that it had to do with accumulated extreme fatigue. At the prospect of having it, I honestly became really depressed. As it seems, it has been a false alarm. It appears that people from the States suffer a lot from it, while it is a relatively almost unheard of condition here, I am not talking about the doctors but rather the patients. Having it would feel in a sense like winning the misfortune jackpot….Who knows? Maybe it is just a cultural thing, maybe people are not getting it so much because they are not aware of its existence (and I am not joking here) or maybe they get it and the doctors name it something else, who knows. Maybe its even a lifestyle thing-we get a lot of sun here, we are blessed to live in a country where people eat a lot of fish, fruit, vegetables and olive oil (the famous Mediterranean diet that can work miracles), we form very strong family & friend support networks and we are on the whole laid back as people, which are two significant stress reducing factors. Still, I don’t mean to offend anybody-but one can’t really generalize so much.
    Anonymous 42789 Replies Flag this Response
  • Mommy cat is not as "wrong" as everyone thinks she is.http://www.nexusmagazine.com/articles/mycoplasma.html
    mommy cat 1654 Replies Flag this Response
  • Sorry if I've offended anyone or hurt anyone's feelings. Never my intention."The road to ***l is paved with good intentions" http://www.rense.com/general44/chron.htm .AOLWebSuite .AOLPicturesFullSizeLink { height: 1px; width: 1px; overflow: hidden; }
    mommy cat 1654 Replies Flag this Response
  • That was quite an interesting article, and although this is not the site to talk politics I just have two comments: a. There is a strong likelihood that the birth defects of the children of the Veterans are due to the depleted uranium munitions used during the various NATO actions (to be politically correct) all over the world. I was unlucky enough to visit a Social Institution in Serbia immediately after the NATO "action" and equally unlucky to see approximately 600 babies and children without hands and legs and with severe birth defects packed like animals, just waiting to die. Teratogenesis increased dramatically in the entire country following the NATO "action". b. Aids is out of control in Africa not because men rape young virgins (????), but because people do not have access to proper medication and poverty and malnutrition makes things even worse.
    Anonymous 42789 Replies Flag this Response
  • Lenna.. Im so glad to hear that you sound as you are on the mend. All the best..
    taniaaust1 2267 Replies Flag this Response
  • Dear Tania,Thank you. I am still keeping a low profile re. my recovery (don't want to jinx it in a sense) and despite the fact that I still feel tired from time to time, this has nothing to do with the debilitating state that I was in. I wish you whole heartily all the best in this difficult fight!
    Anonymous 42789 Replies Flag this Response
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