View Full Version : new to board, something is wrong but not sure what

11-26-2006, 11:23 AM
Hi, I am new to this board and have been reading for a couple of days, decided to introduce myself.

I'm Leslie, a 38 year old mother of three. I have been having mysterious symptoms since March of this year, and the doctors haven't figured out what's what yet. Here is my list:

1) Myoclonic jerking, mild to moderate--these are little spams that occur all over my body, particularly while at rest but not exclusively. Not bothersome except that they came on suddenly in March and haven't relented yet.

2) Extreme fatigue that comes and goes, along with cognitive problems (short term memory and word-finding issues, depression). This may be because of sleep problems, as it seems to have improved following a 10-day regimen of Rozerem (sleep med) which seems to have helped. Exercise wears me out completely.

3) Left foot is partially numb--toes mostly. Started as burning and tingling, and then went numb about three months ago.

4) A couple of weeks of having several (suspected) ocular migraines with no headache.

6) And the one that bothers me the most, my hair is thinning all over, started in August and seems not to improve. No patches but my part is getting wider and my hairline is receding. Very Upsetting.

I have switched from a PCP to an internist and also recently saw a neurologist. So we are slowly but surely trying to rule things out.

My internist is great so far and he says we "will get to the bottom of this." He also says many diseases such as MS, Lupus, and I can't remember what else :? are Great Masqueraders and can be difficult to diagnose, so I am grateful that he acknowleges that.

I haven't had auto-immune bloodwork yet--but am on Monday--because up until now the doctors seemed to be leaning toward emotional problems or perhaps MS. Neurologist says that MS rarely presents with myoclonic jerking.

Anyhow, that is long...thanks for reading if you have made it this far! It reads like many of you are experts and I'm so happy to have found this place.



11-26-2006, 11:50 AM
Hi Leslie: I am sorry you are presently plagued with so many mysterious symptoms and I am hoping whatever the cause it will soon be sorted out. That is probably one of the most difficult and frightening things about becoming ill, not really knowing what is going on.

I am glad you have found this forum and I think you will find it helpful as there are many supportive, and knowledgeable people here that are very welcoming to newcomers.

11-26-2006, 12:23 PM
It certainly sounds like you have a lot going on right now and I hope the neurologist and internist are able to work together to find a diagnosis and treatment. Any type of neurological problem is always frightening. Your doctor is right that lupus can be very difficult to diagnose, because many of the symptoms - fatigue, joint pain, cognitive problems, skin rashes and so on - are very common in other diseases too. So doctors have to look carefully at the pattern of your symptoms, and the results of your lab tests, to see if lupus is a possibility. Since there is no one specific test to diagnose lupus, and every person may present with different symptoms, it can be a long, tough process. Try not to get discouraged if you don't get answers right away - you want your doctors to get it right the first time - and sometimes that takes patience. But it sounds like you have good doctors so hopefully the answers will come soon.

11-28-2006, 10:55 AM
Hi land1968 :lol:
As Marycain and your doctor's stated, Lupus is a very difficult disease to diagnoses and can sometimes take up to a year to get a final, definative diagnosis. It can happen sooner than that, but for some, it has taken that long.
Also, your symptoms do sound as if you could be suffering from one of the many autoimmune diseases (of which, Lupus is one), especially with the fatigue, thinning hair, and the migraine without a headache!
It sounds as if you have a good team of doctors, for that you are very lucky. I hope that, as the diagnostic procedures progress, you are able to start some treatments that will relieve some of your symptoms.
In the meantime, we are here to help you as much as we can. I wish you the very best :lol:
Peace and Blessings