Discussions By Condition: I cannot get a diagnosis.

Fatigue and muscle weakness-please help

• 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!