What could this be?

[Kristina]

I started in Aug.99 w/ tingling in my scalp where the front & back of the head meat to the left. It would come & go. Also had a sore swollen lymph node where neck & head meet on the left & little bumps around tingle area & near lymph node that could be acne maybe. Sept. started getting migrating joint & muscle pain(nothing that lasted) and just not feeling well. That seemed to go away and @ the end of Nov. things took off. I am normally very calm and patient but I became very moody and tired all the time. The tingling on my head was on & off constant,also tingling in face left arm in one spot & by left knee. I got burning sensations on my scalp both eyebrows & eyelids, side of lip,shoulder, & both wrists. Terrible sore spots on my scalp by tingling areas, and a terrible stiff neck. My eyes were very dry. My doctor gave me a shot of torredol? & in 3 hours all tingling & burning seemed to go away for a day & then came back only not as bad. Then in Jan. my eye left eye started to feel funny and had a little blurring  almost felt week in the left half. I started getting what I think they call brain fog, found myself staring alot like I knew I was doing it but I just couldn't stop.I started having this really fast twitch in my left foot and then in 2 other spots on left foot that seemed almost constant at times. I also started twitching in left eye, left shoulder, right lower back, abdomen,rib area,left thigh. In Jan.2000 had mri of brain & spine,evoked pot,nerve cond,eeg. the only abnormality was on the eeg. The neurologist said it was slight but wanted to put me on seizure med to see if one would stop my symptoms. I am only 30 and if this just started I wanted to know why. Convinced him to give me lyme test by my fathers urging that came back pos.  Western blot only had one band though. The titer was high enough that they checked it again and it was still very high. Treated with 10 days tetracycline. My symptoms were starting to slowly subside and then in march I was hit with same symptoms again only not as severe and I started get a vibrating feeling at night from the waist down. Then also at night a trembling feeling in the legs like when you have over done it. Sometimes I would wake up at night & it felt as if my insides were shaking. I also got stiff neck back that lasted for 3 months. June new dr. new lyme test still very high not inspinal fluid. Treated one month doxy 2x aday. Last dose July4 and things do seem to be getting slowly better and no more stiff neck and no more symptoms except sore spots on head. And still not back to normal but feel I am getting there. Sept I start feeling things coming back again still not as bad as first time and now from the knees down a constant vibrating feeling and terrible pains in my toes. I forgot to mention that at times it hurts to raise arms just to brush teeth or my legs hurt to climb stairs. My knees crunch alot and that makes them sore and my neck crunchs alot now. My hands feel stiff in the morning sometimes but never any swelling. I also have pinprick red dots onchest upper arms, stomach,and chest.Some blanch and some don't.I also get sharp shooting pains,sore ribs,soreness under ribs,irregular menstrual cycles now, sore throats,and every day mythe back of my feet hurt. I have had blood work done that shows nothing and have been to 2 different rheum. both don't think lupus all blood work normal. I am on my 3rd reg. doctor. What do you think I should do at this point? Does this sound like anything to you and if so what could I tell this new doctor to look for. It seems like it is not lyme after all? I am sorry this is so long but wanted you to know everything. After over a year I feel I just want a dianosis (good or bad) so I can go on. Thankyou so much for the help and advice. I am going to print this out and bring it with me to the new doctor. Thankyou!!!

[Reenie]

Eric and Kristina:

I have or have had many of the symptoms you describe.  E-mail me off the forum so I can send you my story.  Maureen or ***@****

[Thanks Lin - Lisa]

My Mom has Lyme disease. Had it since 1994. I have researched it for years, and know quite a bit about it.

My Mom's first treatment wasn't long enough, she was on IV Rocephin. After about 1 year most symptoms were back. We have found a new Lyme Dr., which told us her  first treatment wasn't long enough and that is why she relapsed.

I don't know what state you are in, but my suggestion would be to find a Lyme Dr. that has lot's of experience.

I also agree with CCF, you need IV antibiotics, oral isn't strong enough.

Good Luck! Lisa

P.S. My Mom is doing great now.

[Croz]

Kristina,

Aspartame is harmless.  It can probably give a person a headache in extremely large doses, but that is about it.  This Carol is probably part of a conspiracy of people, assisted of course by some willing attorneys, who are blaming their ills on the deep-pocketed maker of aspartame in hopes of a class-action lawsuit.  Unfortunately, all she really can do by spamming this site and others is give people false hopes.

[Eric]

Kristina,

I have all of the same symptoms you have described right down to the pinprick red dots on chest stomach and upper arms.  My eyes are so dry and red in the mornings that they burn.  I am currently on my second neurologist and being tested for Lyme Disease.  My symptoms are as follows:

Tingling of scalp
Elbow and Knee soreness
dizziness
red dry eyes
Muscle Twitching
lower eyelid twitching
sore spots on scalp
red dots on skin
internal trembling
Irritable Bowel Syndrome
Occasional Blurry Vision
Elbow Compression Problems causing hands to go numb at night

I used to live in Buck County, PA and my current neurologist thinks this is where I might have been bitten by a tick.  My tests should be back this week.  

Since you already have a positive Lyme Test you might want to read about the long term antibiotic treatment that is now recommended for Lyme Disease.  Lymealliance.org is a great site.

Good Luck,

Eric

[TO Carol....by Julie]

Carol,
I appreciate your mention of aspartame.  I have recently began taking a multi-vitamin (chewable) that contains this sweetener.  Although I am not certain of this being the instigator of my symptoms, I will indeed watch ingredient listings to be certain that it doesn't make matters worse.

*Kristina-  I hope you are doing well.  Let me know if you find out anything of significance.

Julie

[very similar symptoms]

Hi Julie. I got on by posting exactly @ 9:00 am est. When I posted 5 min. sooner it said I couldn't post. I tried again @ exactly 9:oo am @ I got on. Also I know this is not anxiety. This all began @ a very happy non stressful time in my life. The only time I can put my symptoms getting worse to something is when I get very tired and don't get enough sleep. I hope you will be able to post now. Good luck Kristina

[Julie]

hi there,
I'm so sorry to hear of your symptoms.  Some of the things you have described seem similar to those of mine.  I've had tingling sensations on my scalp for a while and have a tingling sensation in my left arm.  Here's the catch...I have horrible anxiety and when times are stressful I tend to have much worse symtoms.  I actually started using dandruff shampoo beacause of the tingling on my scalp.  I feel like it has helped, but I don't know if that was just my mind telling me it was, so the tingling went away.  I was diagnosed with a right frontal lobe venous angioma, which apparently means nothing to neurologists because it is an insignificant finding?!  For them maybe, but whenever I get a headache my immediate thoughts are that I'm going to die from this thing!  It's awful.  I've tried on numerous accounts to post a question about venous angiomas on this site, but everytime I try I get the "you can't post" message!  How in the world did you get on?  Anyway, I do hope that you find somebody who can help you and I hope maybe I have.  
Good luck.
Julie

[CCF Neuro[P] MD, RPS]

Dear Kristina:

Sorry to hear about your symptoms.  The good news is that your tests have all been normal.  I am not sure what to make out of the EEG results.  I you have epileptiform discharges then you do, if you don't then you have a normal EEG.  One should not treat based on the EEG.  The positive lyme test can be problematic.  If you live in an area that lyme disease is very common then you might have antibodies without having the disease.  You did not mention a particular rash that is common to lyme disease, but as you know not all people with lyme disease notice the rash or have the rash.  Since you have CNS involvement, I would think that you need IV antibiotics and the CSF analyzed. I am not sure if you have had the CSF analyzed or not, when you mentioned "not in spinal fluid". We usually use a 2 week course of IV antibiotics and if there is slow response then another 2 weeks.  However, this would be a mute question if you lived in an area that is not prone to having lyme disease and you never travelled to an area where the tick lives.  

I would guess the next question would be what if the Lyme testing is negative, then what?  I am not sure what to tell you. All your testing has been normal, save the EEG.  It might be that you have a post-viral syndrome or chronic fatigue syndrome.  But I would have inagine that the rheumatologists would have mentioned the latter.  I would probably lean in the direction of a post-viral syndrome if the lyme testing proved negative in the CSF.

Sincerely,

CCF Neuro MD