Symptoms

~~ Head-- severe eye pain, mostly left but recently (in last 3 months) started in Right eye Feels like I'm being stabbed with a hot ice pick, throbs,light hurts to the point I wear sunglasses in the house. Pain in left eye has been going on sice March 2009. I have constnt blurriness in L. eye even when wearing my glasses & have bouts of double vision in my R. eye. Horrible headaches ( not related to eye pain). Have twinges of pain that radiates from top of head down into my jawline, teeth, ear, cheeks & eye, this mostly comes & goes & only lasts a few minutes but it was so bad last month & had lasted all day that mu husband had to take me the the E/R for relief of the pain (this time it lasted all day into the night & I waanted to shoot myself!), My eyelids (top & bottom) twitch all the time now. I have lights ( like a fuzzy tv screen) in my eyes all the time no matter if they are opened or closed. My ears ring. I have bouts of dizziness that lasts for days & sometimes weeks. I also have a feeling of being off-balance.  Swallowing problems, this isn't all the time but kind of hits me out of no where & when it happens I can't even swallow water. Left side of face is weak. My brain feels foggy & I'm getting more forgetful ( this also comes & goes but ahs gotten worse).

~~Torso--Twitches (usually in ribs , shoulders, & sometimes stomach), when I move my neck an intense burning pain shoots down to my tailbone, feels like I'm getting a bear hug & it makes me feel I can't breathe, nausea ( but not like you have eaten something bad, more like being car-sick),bowel incontinance & constipation ( I'm all or nothing) & sometimes have to wear depends if I plan to be away from home long,a constant burning, stabbing pain in between my shoulder blade ( sometimes gets so bad that I vomit), have trouble emptying my bladder ( have to strain like I'm giving birth), spasms in my stomach & back. Sexual problems ( due to numbness).  Most recently had whole spine pain ( intense burning throbbing), &my skin actually hurt but this was the 1st time this has happened.

~~Arms & Legs-- can't use my hands very long to write or type ( sometimes get shock like feelings & sometimes they just go "dead"). Hands feel numb ( sometimes completely numb & sometimes like I have gloves on. Arms also feel this way & I lose all feeling in them but mostly they feel really heavy & I can't raise them over my head ( had to cut my hair off due to this problem). I have been afraid to hold my Grandbabies due to my arm going "dead". Spasms in both arms & legs but worse in legs. I can't walk very far at all anymore & have to use a wheelchair to get groceries but use a cane all the time now, I have tried to push myself to walk farther but my legs literally go out from under me/. Feet stay numb all the way to my calf on L. leg. Spasms, twitches, zaps, & zings are constant now. Restless Leg Syndrome ( I take Requip for this). Tremor in R arm ( usually just if I'm using it).pins i & needles feeling that wakes me up. My feet & legs spasm & you can see my muscles moving under my skin & my toes move by themselves. I wake up with my hands drawn into fists & sometimes have to have help straightening them out. I trip & drop things alot so have to take care with walking & holding glass ect. Have bouts of itching & feeling like bugs are crawling on me ( this usually turns into a "shock " like feeling). My husband has had to get me out of the bathtub several times so now I have a shower chair & take short showers. If I stand for very long at a time I get intense shock like pains in my thigh muscles.

~~ I had one incidence of paralysis,- lost control of bowels & when I went to clean myself ,left side went dead & then I got nauseated, forehead started twitching, felt like I couldn't breath , then by the time my husband got me to the hospital I couldn't move at all.I couldn't talk, smile , stick out my tongue. I didn't even knw I had an IV or cathertor until the nurse removed it for me to go home,   E/R dr.canceled all tests except for CT scan when he found that I didn't have insurance. He pinched me all over & I still couldn't feel anything(he left huge bruises).
, I could hear but it was like it was in a distance. I stayed the E/R for 4 hrs & he said it was either anxiety or conversion disorder & that I wanted to be ill & sent me home. I remained paralysed for a week & didn't get feeling back in my left side for another month & just recently got some feeling back in my toes. I called a friend in Virginia & spoke with her brother who is a neuro-psychiarist who told me to seek another opinion & that he didn't agree with the diagnosis of conversion disorder or anxiety because I didn't have any history of mental illness & all other possibilities had not been ruled out. I had been watching Tv & playing with my dog so I wasn't anxious about anything. He suggested that I go see a counselor just to get the whole "crazy lady" label removed as well as anxiety & depression. I did what he advised & am presently seeing a counselor every other week.

            Timeline of symptoms
**11/12/97- Went to E/R with weakness & numbness in arms & legs

**12/15/2000- Went to E/R with the worst headache I had experienced at the time & also had weakness in my legs & numbness in hands & arm

**Jan.2005-was sent to Physical Therapy due to weakness in arms & legs & neck pain (had whooshing sound in my head when I moved my neck down or looked up.
**Dec 2005 had MRI due to ongoing problems with my neck & headaches , MRI w/wo contrast showed no abnormalties/**
**throughout 2006- noticed my legs were weak when climbing on equipment @ work, started having muscle spasms at times & also muscle     twitches at times but blamed it on my bad back & conditions of my jo*Aug 2007- collapsed from heat on job, was so weak I could barely get my legs to move & couldn't raise my arms, went to E/R & was told it was heat exhaustion
** Oct. 2007 Was taken by ambulance to hospital, admitted with metabolic acidosis & had gall bladder surgery. Eyesight in left eye was blurry. Found out I had kidney disease. After this my symptoms  (below) intensified & haven't recovered since. It seems as I have got a new symptom every 2-3 months since.
** Dec. 2007- Saw my PCP (Dr S at the time) due to ongoing fatigue, was having problems walking, tremors in my hand. Was referred to Ky Clinic ( neurologist Dr M) due to a reflex in my feet & ongoing symptoms that weren't resolving.

**March 2008- Saw DR. M  who ordered EMG, MRI of head w/wo contrast, & bloodwork

**April 29, 2008- had EMG & MRI  done

* May 2008_ Saw DR. M regarding test results was told EMG was ok but due to MRI findings it was his impression that I had Multiple Sclerosis & he referred my to DR.H.( I was told he was over the MS patients). I saw Dr. H. approx. a week later) & he didn't think it was MS but chronic EBV.
** 10/18/08 passed out, was feeling weak & had numbness & tingling. My son again took me to the E/R saw E/R Dr. W. Dr. W got my permission to get reports of MRI & bloodwork from UK & said it really looked like MS to him & that I should followup with my PCP & request another opinion from another neurologist. I no longer had health insurance at this time & hadn't been able to work since Aug. 2007 due to increasing severity of symptoms.
** March 2009- I got a new PCP ( Dr H) because I didn't feel I was getting proper treatment due to my lack of insurance. Also felt my symptoms were being ignored & I was getting alot worse with balance issues & pain.
** Aug 2009- Referred to neurologist Dr.L. who ordered evoked potentials, MRI, & lumbar puncture
** Sept 2009- Saw Dr. L. again for test results was told  LP was normal, evoked potentials were normal, MRI showed approx. 18 lesions but none were active.He told me to avoid heat. He increased my zanaflex, He said he was giving me steroids for my eye symptoms & that they would pep me up.
He put me on prednisone 20 mg-3 times daily to be tapered down over 3 weeks & told me he was treating me for ms & was going to wait on putting me on injections (disease modifying drugs) & that I wouild have to wait until "it reared its ugly head again".
On the last part of the 2nd week of prednisone my eye pain returned & my tremor was extended into my shoulder so I called Dr. L. (as he directed me to do) & he said the tremor was a result of the prednisone & to put warm compresses over my eye (which made it much worse).He then stated that I didn't have MS that he thought something was wrong with my brain causing the symptoms & to go back to my PCP.
**Oct. 2009- My regular PCP left the practice  so I saw Dr. C. He reviewed my case & also my MRI s & reports. He asked if Dr. L. felt I didn't have MS what was the explanation of the lesions on my brain as well as my symptoms, & I told he that nothing had been explained & that I was very frustrated & just want to know what is wrong. He performed neurological testing, & then reviewed my MRIs frome 2008 & 2009. He thought I  had either MS (possibly progressive form) or some other demyelinating disease & referred me to another neurologist.

Hello! Sorry I haven't been on much! My drs appt went amazingly well for a change!! He viewed my Mris & the reports & asked if Dr. L didn't think I had MS then what explanation he gave me for the 18 lesions on my brain. I told him that Dr. L didnt give me an explanation which clearly irritated him. He took blood to check on my kidney function ( I have kidney disease also & hadn't been checked in a year). He came back after looking at my mris & said he thinks that I do have MS & he wants to send me to another neurologist to which I rolled my eyes & said not again I can't take much more!! He promised that this one would actually listen to me & take me seriously ( I sure pray so!). He did neurological testing & said something is definately wrong & he thinks its MS & is worried its the more progressive type of MS since I'm not having remissions. I was scared he would treat me like the others had when they found out I had applied for disability but boy was I wrong! He said we need to get you diagnosed & fast so you can get medical insurance& your disability! He asked why I was denied & when I told him he said "you can't be serious, I see people come in with disability that are way less disabled than you!! He gave me refills on my neurontin & put me back on prednisone he said to treat the MS. I was so happy & praising God when I left there that he actually listened & took me seriously!! The DRs office called today & I'm scheduled to go to the neuro ( DR.S) on Nov. 12 . I go back to him on the 25th of Nov. He also agreed that a negative LP didn't mean that I didn't have MS like Dr. L said & seemed to think this new neuro would be alot better in finding the truth. He said he was treating me for MS util we find out otherwise but thinks that MS is whats going on. He said the sad part of this is the symptoms that I already have , I'm pretty much going to be stuck with since the damage has been done & he also said I should have been treated alot earlier & mabey I wouldn't be dealing with all these symptoms now.  He is in practice with the other Dr. that I was seeing but my other Dr. left to practice full time at the hospital. This was only the 2nd time I had seen him & wow I am already impressed even if its just the fact he actually took the time to listen to all I've been through. Please keep me in your prayers!!!

First of all, sorry I haven't ben aroung much lately, I've been so discouraged! I was so happy that I thought I'd finally found a neuro that could help me but now its looking like thats not the case.He had put me on a 3 week tapered round of prednisone & it did help for the 1st 2 weeks but in the 3 week the eye pain came back with a vengence plus a tremor in my shoulder that wasn't there before. I called him & told him about this & he said to put warm compresses on my eyes (made it worse) & that the prednisone could be causing the tremor & to call him back at the 1st of the next week. I called back the following wed. (1 week & 1day after the last dose of prednisone) & he finally called back the next day & said this is not MS (after telling me before he thought it was MS & thats what he was treating me for)& tp go back to my PCP. I asked him why after standing only a few min. I get the sharp electric shocks up my legs & arms among my other sx & did he think it could be a muscle problem or a nerve problem. He says "oh there is 1 test I could do on your muscles but I think something is going on with your brain causing all of this so go back to your PCP"! So, I'm thinking if something is going on in my brain wouldn't I see him the neuro!! I went to my room & cried like a baby & have been really discouraged! He said my lp didn't show anything although I haven't personally seen the results yet. Last night my hubby drove me to the E/R as I started having this horrible pain in the right side of my face, It was radiating from the top of my head down through my cheek & jaw line & I just wanted to be shot it hurt so bad! It came on suddenly about 11 am & at 8pm I couldn't stand it anymore so he took me to the E/R ( my eye was hurting with this also, as well as my ear & my ear was ringing really bad. I again didn't get an answer as to what it was but I did get pain meds & was sent home. This morning the pain is better but I am getting twinges of pain in the same place & praying it don't come back! I can't afford to go to my PCP not that it does much good anyway & if I get another DR. I fear since I have seen so many Drs they're just gonna call me crazy & say I want to be sick. I don't know what to do at this point. Not only have I had all this going on but I'm really swollen ( hands & feet especially). I had to take my wedding ring off 2 weeks ago & the indentation of it you can still see on my finger. Around my mouth looks blue but nobody will listen to me so I guess I will lay here until whatever this is kills me. I asked my hubby if I die to take me to DR. G from the tv show & mabey then at least someone will know whats wrong! I usually don't give in to depression but its been really hard to fight it the past month (too much has happened). As far as Drs go I feel like I'm surrounded by uncaring idioits! I don't understand why my friend was dx'd with only 3 lesions on his brain & normal lp & I have way more sx & 18 lesions & can't walk alot of the time & I can't get a dx. My hubby says its because we don't have insurance which is probably true but I can't help thinking theres someone out there somewhere that can help me. I guess I'm just giving up for now!

Wow it has been a trying few days! My brother inlaw has been in ICU for 2 weeks due to a botched 14 hr back surgery & his kidneys shut down, then last night I got a call that my grandmother might not make it through the night (shes hanging on barely but expect to get the news anytime that she's gone). I don't want her to suffer any longer but mabey its selfish but I just don't want her to die on my Birthday. I had to be @ the hospital for the evoked potentials @ 7:30 am , the test for the most part weren't that bad until they put the electrodes on my leg & ankle & WOW....it hurt! It sent me into spasm & I'm still having them! The L. leg went smoothly but she kept having this funny look on her face & readjusting the electrodes on my R. leg so I don't know what that was about. I went from there to check on my brother inlaw at another hospital (he was flown there from that awful excuse of a place I call my local hospital). Then I went to the neuro for my results. He hadn't got back the tests for IgG or O-bands but everything else was normal & he said that the EPs were normal also. I think they send some of the LP tests to Mayo Clinic. I have to go back in 3 months & for another MRI in 6 months. He doesn't want to put me on DMDs just yet (so evidently he's still thinking MS), but I have to continue on the steroids & he upped my zanaflex. He says due to the side effects of the injections (DMDs) he wants to wait & try the steroids 1st. They are helping with my eye pain but its making my insomnia worse. The way he explained it is this: we know something is wrong & we know I have spots on my brain but we have to wait for it to rear its ugly head before he can dx me & start me on DMDs. He says MS is a fickle disease, you can see all the signs one day & mabey not the next. He told me to avoid heat at all costs & he wants to check in on me in 3 mo to see if anything is different before the MRI in 6 mos. He told me to call him if anything new happens or I get worse. Evidently my MRI didn't show any active lesions  so he needs more definative proof. Yes, I was sure hoping for answers but at the same time he's already done more for me in the last 2 weeks then all the others have in 3 yrs so I feel I can trust him & he is going to call me when he gets the rest of the LP results (hes really good about personally calling me to answers questions & to go over test results). For now I guess I'll keep praying & Thank God that He raises me up & for my faith or I'd been insane at this point. Has anyone ever had the spasms after EPs or had a "burning spine" after the LP??