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Unexplained Symptoms--direction?
Sent to Health Experts April 21 02:50 PM

I am a 17 year old female living in the United States. For 7 months now I have been experiencing a range of symptoms, the most debilitating being progressive and worsening muscle weakness. This weakness began in my hands, spread to my arms and is now also effecting my legs so that it is difficult for me to walk normally. I have not been able to attend school for the past 6 weeks because my symptoms have become so severe. I am constantly fatigued (not sleepy, just exhausted) especially with activity, and also experience muscle twitches, cramps, sharp pains, and tightness on a day to day basis. Shortness of breath, and palpitations also occur with small amounts of activity. I have also experienced difficulty with focus which seems to get better when I sleep well at night and short term memory difficulty. Other symptoms include a fluttering or popcorn sensation in my muscles, and a restless sensation (sort of like RLS) in all of my muscles. My handwriting and coordination have changed drastically because I can no longer easily control my hands and arms. I have lost a large amount of flexibility and stamina. I am currently working with my primary practitioner and a neurologist to discover what may be causing these symptoms. Blood tests have been taken eliminating mono, Eptein Barr, Lupus, Lyme Disease, Anemia and Diabetes. My thyroid has been tested and there are no problems there. MRI's of my brain and cervical cord have been done with contrast and came back normal. In my initial neurological examination hyperreflexia was noticed in the deep tendon reflexes of my knees (wheras it wasn't there a couple months before) and the reflexes in my arms were barely noticeable. Also, about 3 months ago an EMG/NCS was performed on my arms and neck with no abnormalities.

I realize that it is impossible to make a diagnosis of my condition without examining me personally. This is why (of course) I am working with my doctors in that area. I was just wondering if there is anything you could suggest to me to try to relieve my symptoms a bit while we are searching. I have tried OTC pain relievers for discomfort and they have been ineffective. I am currently seeing a ND for nutritional supplements and am also being seen by a chiropractor, massage therapist and also a counselor for the emotional aspects that any long-term illness causes.

I was also wondering if you had any suggestions of more routes to persue as to what these symptoms could mean. We have explored so many ideas with no results and my primary practitioner is getting stumped...doesn't quite know what to look for/at. I'm not sure what the neurologist feels or thinks for I have only seen her once and couldn't get in for a follow up until 3 months from that appointment because she is so busy. So if there's anything you think this looks like that we should explore would you let me know? Thank you for your time.

 

Optional Information:
Female , Age: 17

Already Tried:
endocrinologist, chiropractor, massage therapist, 1 previous neurologist (not satisfied with service...didn't even give follow-up to explain test results on MRI of brain and suggest something) ND nutritional supplements, blood and urine tests, allergy testing

Customer (name blocked for privacy)
Status:  Closed   Value: $30
Answer
April 21 3:58 PM (1 hour and 7 minutes and 37 seconds later)
         
REPLIEDCheck Mark
I see they have looked at lupus, but there are not always positive blood results at the start of this disease. Auto-immune problems, including fibromyalgia, would be possibilities. I'm wondering if they are concentrating on the neurological possibilities and this could be a muscle pathology.

If you can't get in to see the neurologist for 3 months, I'd suggest a major medical center (Mayo clinic is great). You could go there without an appointment and just wait and be seen more quickly than 3 months. Things seem to be progressing rapidly, and you need to discover the cause quickly.

Let me know if you need further information. Please remember to click the accept button if this information is helpful. Thanks. JeanRN
PictureJean Murphy -- Nurse (RN) -- 99% Positive Feedback on 266 Health Accepts
pediatric specialty, acute care, physician office, home care, triage
Reply
April 22 1:38 PM (21 hours and 39 minutes and 47 seconds later)
         
Reply to Jean Murphy's Post: Thanks for the suggestions. Sorry for the late reply....I was away from the computer. Would you mind telling me what neuorological issues or 'muscle pathologies' you think are a possibility at this point? Also I would really like it if someone could suggest a possible way for me to relieve these symptoms at least a bit while we're still looking. Thanks :D

Edited by Customer (name blocked for privacy) on April 22 2006 at 1:39 PM
Customer (name blocked for privacy)
Answer
April 22 3:50 PM (2 hours and 12 minutes and 46 seconds later)
         
ACCEPTEDCheck Mark
Usually when they start looking for causes for this type of thing, partly because there are things that have to be ruled out, and partly because they don't want to unnecessarily concern the patient and family. I can give you some general ideas, but that is just what they are, general ideas. This has to be guided by your doctor and any specialists you see. I would suggest a rheumatologist. Your symptoms are particularly similar, I think, to an acquaintance, but I want to confirm this before I mention the particular problem.

It is hard to say how to relieve the symptoms when it isn't known what is causing them. However, plenty of rest and plenty of water always help. Also, even though you are feeling weak, you really must keep moving as much as possible. If you can't get out of bed on a day, be sure to move all of your joints while you are in bed. Maintaining the ability to move your joints will be very important to your recovery. It could be that the doctor could prescribe an anti-seizure medication to help with those RLS type feelings, but that could mask symptoms that would ultimately lead to a diagnosis. Perhaps a muscle relaxer would help some. If all you can do in a day is get out of bed and walk around the house, do that. You don't want to push to the point of total exhaustion, but you need to keep moving as much as possible.

If you are wanting to research this, this site has a general list of many neuromuscular diseases. I need for you to understand, though, that many things have similar symptoms, and you can perhaps find a direction to look here, but you can't make a diagnosis.
http://www.mdausa.org/disease/40list.html

Various myopathies are also possible.

I'll be back later with more.

Let me know if you need further information. Please remember to click the accept button if this information is helpful. Thanks. JeanRN
PictureJean Murphy -- Nurse (RN) -- 99% Positive Feedback on 266 Health Accepts
pediatric specialty, acute care, physician office, home care, triage
Reply
April 23 1:05 AM (9 hours and 14 minutes and 21 seconds later)
         
Reply to Jean Murphy's Post: Thanks so much for your health and time. I realize of course that there are so many things this could be and that you can only give me suggestions--not a diagnosis :D Nevertheless I still appreciate your time and help. So thanks, and any further ideas or suggestions that might come to you would certainly be appreciated as well.
Customer (name blocked for privacy)
Answer
April 23 2:06 AM (1 hour and 1 minute and 34 seconds later)
         
REPLIEDCheck Mark
If I come up with anything else, I will let you know. I do hope you are feeling better very soon.

Let me know if you need further information. Please remember to click the accept button if this information is helpful. Thanks. JeanRN
PictureJean Murphy -- Nurse (RN) -- 99% Positive Feedback on 266 Health Accepts
pediatric specialty, acute care, physician office, home care, triage
Reply
April 23 1:12 PM (11 hours and 5 minutes and 56 seconds later)
         
Reply to Jean Murphy's Post: Thanks so much for all your help. For your information, after a long hard search, I finally received a diagnosis--Probable Lyme Disease. This is something we thought we'd eliminated earlier, but upon exploring further we found evidence to the contrary.

Anyways, my understanding is that this condition is not very understood in the medical and other communities and so many people go undiagnosed for a long amount of time. There is also a large controversy over diagnostic criteria and treatment of the disease which makes diagnosing it even harder. I just thought I'd share, because it seems like not many people know about it and I want to help spread the word. If you'd like more info, let me know. Thank you again for all your help.

Edited by Customer (name blocked for privacy) on September 13 2006 at 11:31 PM
Customer (name blocked for privacy)
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