You may want to check out Lyme Disease. Only half the people that get it have the rash, and it is in 49 states, out there by the lake you were you were running around.
There is a huge list of symptoms including the usual arthritic ones and numbness, but also memory loss, stuttering, and lots more neuro ones. You need to do your own reading because most doctors do not understand the symptoms and want to rely on tests which are only about 40% accurate.
Go to http://www.LymeNet.org/ and read the whole site. It may be what you are looking for.
Good luck, both of you.
Dear Kay,
I know.
Give yourself a break. I am learning the medical science is sort of like auto mechanic dx. They look under our hood, run some test, rule out some stuff, scratch their head, research some more, then if all else fails, they have no other choice then do a 'wait & see' what happens next.
Hang in there. You are not alone in that, our bodies betray us. We hang most everything on well funtioning systems. I hope you find some answers, but try not to let the journey make you lose hope.
Postings are taken PST @ about 6am.
i know this is against the rules but i cannot seem to get online
to post a question. I have been trying for 3 weeks. I can only get online in the evenings and weekends and it always says--no more questions.
if anyone can tell me about the frustrations of being without a diagnosis please respond.
as of now i have been told --peripheral neuropathy--
funny thing is i stepped out of bed in August--after having been out playing at the lake and hiking around and all--
well i got up and my legs were so numb and weak i had to use crutches to get to the doctor.
he did MRI of everything --neck, cervical spine, pelvis, leg and also CAT scans and nerve studies.... it sounds like MS but no
one will say what is wrong...
each day i watch my legs get more dead, cold, and creeping up my legs
each day i feel the fatigue
each day i forget half of what i did or said
AND
each day my 15 year old gets more scared
as for me-----i am so numb i am afraid to really get mad or cry or whatever---cuz i might never stop.
so i look here for answers and
wait for the time when i will have my spinal tap --on march 5th
grrrrrrrr
sorry to ramble
kay
Dear Leah:
I am sorry to hear about your symptoms. I would think that some of your symptoms might be coming from the encephalitis that you had 11 months ago. What was the infectious agent? Did you have any seizures with your encephalitis? I think I would start with some basic labs and do an EEG. I might also repeat the MRI with special cuts for epilepsy. Some of your symptoms getting worse when your fatigued is likely related to the encephalitis as your reserve is likely lower for that function. As you get tired, the lack of reserve accentuates the speech problem. The most likely explanation is that what your experiencing is from your encephalitis, but some thought needs to be given to other things. So, the basic lab work such as a B12, folate level, etc.
I hope that I have helped somewhat.
Sincerely
CCF Neuro MD