a bunch of MS-like symptoms

[patsmad]

Last May, I experienced a raw sensation in my arms and trunk that developed into
a burning feeling (felt almost exactly like a sunburn) in the back of my neck, trunk, and back. This lasted continuously for 2 ½ weeks. Then, a few weeks later, I started experiencing a “buzzing” sensation in my lower back/groin area when I bent my neck down (I know, “L’Hermitte’s sign”). At the same time, I started to experience some numbness in my toes, my hands, and a feeling of wobbliness – like my legs wouldn’t support me. This is STILL going on today (8 months later), but it is even worse.
I also experience tremors occasionally in my arms (depending on position), a mixture of numbness/rawness/sensitivity in my legs (esp. the tops of legs and knees) and my feet have numbness all over, and they feel like their inflamed and swollen a lot of the time (especially when I wear shoes, and in the morning) – and sometimes it feels as if the areas around my toes are stuffed with cotton when I curl my toes. I’ve had tingling in my nose and face, I have pretty bad clonus in my legs/ankles  and for a long while there my legs buzzed if I tapped them. I feel like I’m jittery and “torqued” all over – when I stretch in the morning, my arms and neck shake. My legs feel tight and shaky, yet I feel like they will collapse when I walk (worse after I exercise or do a real short set of squats,

[CCF-Neuro-M.D.-PW]

I cannot give you a clinical diagnosis over the internet,so this advice is purely educational in nature

The symptoms could localize to the spinal cord (cervical if you r arms are involved). There are many causes of spinal cord symptoms only one of which is MS. MS is characterized by recurrent and discrete attacks of neurological symptoms, which you do not seem to have. Once a structural lesion liek a tumor is ruled out by MRI, one of the most common causes is inflammation of hte spinal cord, termed 'Transverse Myelitis', and common causes include viral or post-viral  
Diagnosis of the cause of the inflammation comes from the clinical history and suspicion and spinal fluid analysis. MRI may show the changes in the spinal cord.

Symptoms may persist despite the fact that no further damage may be occurring, as there may be long term damage to nerve fiber tracts. The nerves to the legs regenerate the slowest so there is a greatre chance the legs will not fully recover.

Good luck

[sally456]

if you really want to know if it is ms or not..then i suggest going to an ms specialist or a university hospital.  That way you know for sure because you are goign to the best, getting the best test and you wont have to quesiton it later on if they tell you you dont have it...
And ask questions if its not that..what else could it be..maybe this small fiber neuropathy....

also, ive never had a rash or fever either, and antibiotics dont always work for lyme disease.

Let us know!

[Citizen T]

The Elisa test is reliable to check for Lyme disease after a month of infection.  Seeking a so called "lyme literate" doctor is quite unnecessary.   People with true Lyme usually have severe joint pain, keep this in mind.

[erinbaba]

For several months last year, I had a variety of stroke like symptoms, numbness/tingling, memory loss, migraines, etc.  I went to 3 Neurologists including 2 MS specialists and the only concrete diagnosis was "Complicated Migraine."  I started Topamax 50 mg./2x daily in October 2005.  The Lyme tests were negative and none of my doctors felt that a rash which I had since May 2005 meant any significance, until I went to a dermatologist in November 2005.  He looked at the 2 inch red circle on my back and immediately told me it was a deer tick bite (nb: i live in NH) and asked about Lyme disease testing.  I had been testing a few months prior at the results were negative.  He sent me home with meds and by the 4th day, the cloud lifted and I started to feel significantly better.  I was quickly switched to IV antibiotics for 4 weeks due to the "Advanced" stage of lyme disease, aka Neurologic Lyme.  I have nearly fully recovered except that when I tried to stop the Topamax last week, I suffered another serious Complicated Migraine and have significant short term memory loss from the past 2-3 months.    In short, do not stop looking for answers.  The Lyme testing is not accurate except for one lab in the country - where your blood should be sent.  On a related note, once Lyme reaches the advanced stage, it can recur after initial treatment and sometimes requires multiple treatments.  Good luck!

[erinbaba]

FYI, the recommended lab for Lyme testing is Igenex.  Good luck!  erin

[patsmad]

Is Lyme Disease even a concern in states such as Colorado or Wyoming (where I live)? Someone told me it's not a problem out here - just Rocky Mtn. Spotted Fever.

[patsy10]

The Elisa test for lyme is the most inaccurate and worthless test of all.  Unfortunately, most general doctors do not know this and when it comes back negative they say no lyme.  If it comes back positive then a western blot is ordered. The western blot is far more reliable but still has it's flaws.  The chance of finding lyme in spinal fluid is about 20% even if someone has neuro lyme.  There's lots of information at lymenet.org if anyone is interested in researching it further.  Lyme has been found in every state but Montana.

[patsy10]

I agree with erinbaba.  I also had 3 bullseye rashes in 1992.  I've never really been right since.  I developed a full-blown neuro syndrome about 6 months after the rash.  The antibiotics helped but I only took them for 4 months.  I think I went into remission.  It took years.  I've always had weird rashes and fatigue etc.  I developed another neuro syndrome again after having surgery in 2005.  I'm waiting for results from Igenex.

[MICH2604]

I have and do have similar symptoms that you have.  Ive been sick since August 2005.  I was given and antibiotic for what the dr thought was inner ear infection.  I was dizzy and my head hurt...like pressure.  So i took the zmax...and everything got worse. After that wore off i was left with sensitivity to light and then new things appeared.  Such things as.

shaky hands....like a tremble....people would ask if i was cold

my legs would shake when i cleaned the bathroom

I couldnt feel my legs while driving.

when i bent over i got so sick...sort of dizzy but not, my eyes felt fixed.

Ive seen 3 nuerosurgeons, 1 nuerologist, many ER doctors...endocrinologist, opthamologist.. nothing could be found...and often it stunned the dr's.

while i am not a dr, i would suggest looking into lyme disease...lymenet.org.  Is a great site.  You said you took antibiotics before and the burning stopped.

Oh and the lyme test you had done probably was worthless.   I looked at mine done by a lab and they only did half of what should have been tested.  

Thats just my 2 cents.....lyme is worth looking into.

[Citizen T]

The Elisa test is a more "broad net" which can result in some false positives.  This is because it detects antibodies that can be produced by non-lyme conditions.  Over 95% of people with Lyme have positive Elisa after 4 weeks.  The westernblot is a smaller net.  Unfortunately, mis-information has spread over the web leading a large group of people to believe that there is only one lab in the US that can diagnose Lyme. The very notion is foolish-- A rose is still a rose, whether it is in New york or texas

[MICH2604]

Im not sure if Elisa are used anymore.   I was tested by my family dr on recommendation from my neuro to do a lyme titer.  And western blot IGG was ordered.  The missing IGM...not sure what happend to that.    

That came up negative.....yet thru igenex i showed positive bands a month later.  

we have to remember this is testing antibodies....not the bacteria itself.    

In my opinion all lyme tests arent very accurate.

[patsmad]

I have checked out lymenet.org, but I can't seem to find anything about what the best method of testing is, nor where to do it. I'm a student (non-trad) and the student health center tested me for Lyme (this is after my first 3 MRIs) and thought I was crazy for even asking for the test. It came back negative, and if I get tested again I'm sure it will be negative. Yes, when I took the antibiotics last May (it was Doxycycline) the burning did go away, but it wasn't until the last day of taking the pills. But a couple of days before the burning started, we were hiking in the mountains, and I noticed a maroon/purple-looking tick or spider on my shirt. (Didn't look too closely) If that was indeed a tick, would the burning start a day or two later? I don't know, this seems way too intense and significant to be Lyme Diease - I'm a negative person, and I'm always thinking MS...MS...MS...
Thanks for you helpful posts, everyone!

[MICH2604]

there is a section on that site called newbie links...its under the medical forum.  If you signup and post there are many that can answer any questions you may have.   Doxy is an antibiotic used for lyme.

in my opinion its best to rule everything out, not put your eggs all in one basket.

Lyme disease IS serious its just most doctors downplay it.   do some searches on lymenet.  

oh and most of my symptoms were neuro in nature...im now 8 months later getting joint pains.

[patsmad]

wow, didn't know there was a limit to the number of words! I got cut off - here's the rest, not that it probably matters now...
   "and it’s worse in the dark). In addition, I have weird feelings in my fingertips - I guess it’s like numbness, but also like their “stuffed”, and I’ve even noticed at times that some of them are bigger or more swollen than the same fingers on the other hand. Don’t know if this is related, but for the past 3 weeks my neck has been stiff and hurting a lot. I have seen 3 neurologists, had an MRI of my brain, 3 MRIs of my cervical spine with/without contrast (the last one done three weeks ago), and an MRI of my thoracic. NOTHING shows up! I’ve also been tested for B12, thyroid, and Lyme. Blood work showed elevated levels of (something) that indicated either allergy or parasites, so I was even tested for parasites! No one knows anything.  I am very scared and worried, and of course I’m afraid that I have MS (these are all “classic” signs, I’m the right age, I live above the 37th parallel, etc) but is it very likely that it’s still not showing up 8 months into having all of these continuous symptoms?? What else could it possibly be? I was tested for metals – mercury is a little in the red, so is platinum, arsenic, and tin. If it is MS, is all this an indication that I have Primary Progressive MS since I haven’t had a remission?
Please help.

[patsy10]

Wow!   I have the exact same symptoms as you have described. I've had mine for 9 months, continuously.  I've also had the million dollar work-up.  I've had the following tests: MRI's of brain with contrast twice, MRI's of cervical spine twice, MRI of thoracic and lumbar spine, EMG of legs, evoked potentials.  All tests were normal.

I've seen 3 neurologists.  All three said it's not MS.  All three said they don't think I have a serious condition.  The third one said possibly fibromyalgia.

My legs feel like they are "not there" when I walk.  My arms feel this way too.  I have twitching, burning, numbness, tingling all over, floaters, rashes, leg weakness, muscle pain.  It's very scary.

Incidentally, I had the same symptoms back in the early 90's about 6 months after a bullseye rash.  I was treated for lyme with several months of antibiotics and I got better.  I never had a positive test result.  I'm going this route again now.  Just saw the doctor a couple of weeks ago.

You may want to consider a lyme specialist.  Testing is totally unreliable and lyme literate doctors diagnose it based on clinical symptoms.

Good luck to all of us.

[sally456]

you have alot of the same symptoms as  me too..tingling, numbness, burning, floaters...ive had this for a very long time though...you've probably read my posts...i had a spinal taps years ago,..so i was thinking that would rule out lyme??
I thought it would find something in the fluid if you ahd lyme...anyway, i didnt think i could have lyme for such a long time..and i dont remmeber any rashes or anything...anyway.
Ive been so scared of ms for so long...it takes its toll.
I did read the symptoms for lyme and i hve more for that than i do ms!!

[sally456]

actually patsy isee that early nineties you had these symptoms too!
I had them after i was told i might have ms..then i became very anxious and got the burning, numbness, tingling, etc...

Now ive started with some twitching..i had bladder problems and vision..why i cant get off the ms thing i dont know. its been 18 years, you'd think id be much worse than i am right??

[cols]

Maybe you have small fiber neuropathy.  Ask to have autonomic testing done or a dermal biopsy.  Many of your symptoms are consistant with small fiber neuropathy.  Most neurologist don't know to look for it so they may have never mentioned it to you.  
Typically, neuromuscular specialist are the ones that end up diagnosing it after everyone else makes you feel like you are crazy.

[patsmad]

That's interesting, because after I experienced the burning back in May, I was given some antibiotics "just incase" it was from a tick bite or something, and towards the end of the prescription, it went away. But since antibiotics have always worked fast for me before, I brushed it off as coincidental. Then a couple of weeks later, everything else started. I've been going through hell since. You guys think it's really possible that I have Lyme disease? I never had a rash, fever, or anything else.

[wonderwhat]

I guess I will add my little story for some advice.
For the last 3 years I have had tons of problems.
I am hypothyroid, but I have been corrected for 3 years.
All symptoms that existed three years ago still persist, and some have worsened.  I have had all the MS tests, except for spinal (which I intend to avoid).  I have most of the MS symptoms.
(All symptoms for 2-3 years - daily) Muscle twitching ALL over (right side worst though), weakness, fatigue, numbness and uncoordination/clumsy on the right side of body (arms and legs), constipation every single day, bladder does not fully empty and shows spasms on urology tests,  brain fogged often in morning and other times of day, foot restlessness at night, some blurring of right eye vision (left eye still perfect), overall sick feelings most days, soreness, burning, headaches, sore right eye, numb face, seemingly having muscle weakness affecting right side joints.  A loss of fine motor skills in the right hand.  I play basketball 2x per week and the last three months the right hip, knee, and ankle have been very painful and weak, so I had to quit.  I hope to resume sports in a few weeks.  The right leg muscles don't seem to be as tight/solid anymore (a definite difference from the left).  My left side feels great! Just as normal.  2 hours of basketball leaves the left without any joint problems or weakness (other than normal).

The docs have really not found much and I gave up because it was costing so much money and time.  I was just letting it slide over the last year, but now that I am unable to be playing sports, I have gotten frustrated all over again.  Not sure what I should do as far as seeking new advice.  Autoimmune disease runs in my family and that is the reason for my thyroid problem, so I assume that is the cause of whatever else is going on.

Anyone have a suggestion as to a direction to take?
Anyone out there have luck with vitamins?  With a serious weight training program?  I am open to ideas of all types.

[sally456]

We all have similar symptoms..my main ones are bladder, vision, and then numness of tip of big toetip of index finger, and sometimes right knee cap..also, tingling, burning and feeling of liquip dripping isdie my body..i beleive i also have some hearing loss, ive had night seats for many years, worse during menstral cycle, and ive recently developed small twitching in back. The really bad tingling, burning and strange sensations i only seem to get really bad when im under alot of stress..like now...otherwise, ill maybe have a little tingling here and there, but nothing that lasts....oh and my handes and feet get pins and needles and strat to fall alseep quickly.
We all had mris and i had a spinal tap..it was normal.although my tests were done many years ago...i did stop thinking i had ms until my visin problem 5 years ago..but if i do have it my attacks..if thats what they are are so few and far between..the only "attacks" ive really had i guess is the bladder all though that lasted 7 years until it got better with the birth of my first child and has never returned to the way it was for 7 years...it feels so much better..and my vision has stayed the same for 5 years..not getting better, not getting worse...are they considered "attacks".???.does anynoe know.?.
Also, just a bit of hope for all of you who think you might have ms...my friends mom has had it for over 40 years..she raised 4 kids and now lives in fla. never needed a wheel chair, things came and went over the years, the disease never got aggressive...her biggest problem is catheterizing herself..which is a big problem, but compared to everything else, she is really doing well....

[sally456]

My spelling is harrible...sorry i should have read before submitting...its the third toe on left where just the tip is a little bit numb...and i have had night sweats for years, numbness in tip of right index finger..also very mild..and somtimes a little numbness in right knee cap...I also think my hair falls out alot...but i have such think hair you cant notice and when i went to the dermotologist he thought i was nuts...but you should see how much hair actually does fall out...i saw this was a symptom of lyme..but its so hard to believe thats what i have since i started with bladder problems 18 years ago!!!Was lyme even around then...

[patsy10]

Sally, lyme has been around for a long time.  It just became recognized, I think in the 80's in Lyme Ct.  If untreated, it can go into remission and come back later or can persist.  Some people are severely ill and bedridden or in a wheel chair, others are walking around with a bunch of weird symptoms that no doctor has been able to diagnose.  What generally happens is people end up with diagnoses like fibromyalgia because nothing shows on testing.  Fibromyalgia is a group of symptoms with no known cause.  It's not really a disease.  It's a syndrome.

I do think having another brain MRI would be a good idea.  If it's negative then you don't have MS.  I've  had 2 of them 6 months apart, both normal, yet I have terrible neurologic symptoms.  I know it's easier said than done.  I still am obsessed with MS like you are even though 3 neuro's said I don't have it. Then what is causing all these weird symptoms?

I'm not saying you have Lyme. I'm no doctor, but just something to think about.

[jan]

Hi Sally,

In the other thread you asked what my symptoms were that made them suspect MS.  I posted my answer there.

I should add that I have dysautonomia and am being treated for it (neurocardiogenic syncope) and Inappropriate Sinus Tachycardia, Interstitial Cystitis (and frequent UTI's), Spondyloarthropathy of the C-spine, IBS (possible colitis), atypical migraines, and 2 different skin diseases (Grover's Disease and Granuloma Annulare), costochondritis, and arthritis.

Quite awhile ago a neuro on this site suggested I get tested for mitochondrial disorder, but I didn't.  I met a girl online who was my twin as far as diagnoses and she had it.  When she told me they only treat the symptoms I thought, why should I get tested that's what they do for me now.

I have had 9 MRI's, because I've seen more than a few neuros and they all suspected the MS.  3 lesions showed on my 1st in '98 and no more ever popped up, other than on EEG where another showed up.  My last, I am guessing, was a couple years ago and my neuro wants to do another next month.

[bengalcats]

Hi here is a long list of my symptoms that have me worried to death.
bladder spasms
visual disturbances with a gray line down my visual field
muscle weakness and pain
joint and bone pain
weird numbness between my toes
vaginal numbness
extreme itching with no cause to it under my jaw
headaches nearly daily
weird sensations in my brain like its short circuiting
electrical zaps down my spine
senations in different parts of my body that feel swollen but arent really
hand and leg tingling
neck pain
constipation
there are many more i could list, I get flairups of different things several times a year and I do not have all the above symptoms at one time. I do feel that I have MS but my dr said no. I had 3 MRI, ct scan tons of blood work,eeg ect. everything was normal except for my last mri that said I have a arachnoid cyst but was told not to worry about it and there were also a few bright punctate t-2 bright signal foci in the white subcortical white matter bilaterally. does anyone know what this means? please help you can email me at ***@****.
i am terrified this has been going on for so many years. i am desperate for communication.

[sally456]

I do have many of the symptoms on the list...actually all of my symptoms that i have are on that list...
I did have a spinal tap years ago when they were testing for ms..it was  normal, but i know they werent thinking lyme and probably didnt look for it..But would something have shown up if it were lyme??
I am going to an internist for a physical and want him to test for lyme..what kind of test do I ask for???

[patsmad]

All of my symptoms definitely correspond to Lyme symptoms, but what about the buzzing/tingling experience I have when I bend my neck down (L'hermitte's sign)? That's a 'classic' symptom of MS, and how could it be caused by Lyme? You'd think that something is in my spinal column that gets irritated by movement, and that doesn't sound like Lyme. Again, all three of my cervical MRIs are negative. I'm very confused...

[Gold24kt]

Great article generated by Malden1! Thanks!
http://drcranton.com/CFIDS.htm

[erpatti]

I had to write, you guys  are going through the same thing as me. About 12 years ago I had dizziness, eye problems , tingling numbness, muscle pain , severe fatigue, sleep problems, had quit the workup , everything negative. I am a nurse pulled ticks off myself convinced Dr. to give me antibiotics even though my blood and spinal tap were neg.  I got better slowly.  Well guess what its back and the ms thing still has me worried. Went through mri spinal tap everything again ?fibromyalgia ? chronic fatigue ? chronic lyme. Neuro says its not me again rhuematologist has me on  doxycycline  just finished 6 weeks.  A little better head not as foggy eyes still hurt still tingling or prickling in face, forearms, legs , feet buzz. I think all the Dr. think I am losing it because my tests look fine some days I think I am dying . Get treated for lyme you have nothing to lose . there are so many strains that a neg test means nothing. I have been out of work for 2 months

[frodo'sgirl]

Glad I found this forum. I have decided that it takes modern medical testing 15 to 20 years to be satisfied with a diagnosis of MS regardless of how long we are plagued by the symptoms.

I wonder if there could be a treatment intervention when the symptoms first appear, that could slow the progression of this disease.  I have a neurologist who is at least willing to take all the symtoms and normal test results from other doctors' effort to diagnose, and surmise that it may be MS because all the symptoms are MS symptoms. But he is stuck with a system that requires him to have the concrete evidence before he can diagnose MS. Do I have to pray for a lesion to show up on an MRI?

I would have more success establishing a disability claim if someone could call it MS. But instead, I have "syndromes" for all the symptoms and am dismissed by SSDI. I am in the 3rd appeal stage of the process. In the meantime, I have applied for Medicaid assistance with all the medical bills that are piling up since I can no longer afford health insurance. I used to be self-employed.

I would welcome any advice about doctors/medications that help with the huge laundry list of impairments.

[erpatti]

What are they calling your syndrome ??fibromayalgia, chronic fatigue??  I have a few lesions in my mri and they still tell me its not MS. I get treated for lyme and all my tests for lyme are neg.  My diagnosis is questionable seronegative chronic lyme , fibromyalgia chronic fatigue, depression. Yet I do not met all the requirerments for any of the above.I still have 4 more months of sick time I work in an er which i have enough trouble just walking right now.  If I tried to go an permanent disability I wouldn"t stand a chance.  What are your symptoms??

[jcyr]

I have never posted anything before, so here goes. Started with optic neuritis in June 2002. Have had constant neuro problems since. Ataxia, optic neuritis, clonus, muscle spasm, bladder not emptying, tremor, foot drag, the whole deal. I have had one abnormal Visual Evoked Response test, one false positive Lyme titer spinal tap, but all other testing has been negative.  I have done IV Steroids, plasmaphoresis, chemotherapy, and IVIG to treat these "symptoms".  Today, I went to see my neurologist who has officially given up on me.  He told be that because there are no "positive" lab results, he has to explore the fact that my sympotoms may be psychological. I am quite distraught to think that just because the doctor cannot, or will not find an answer, he would think that it is all in my head.  Which, by the way is impossible- I have problems with the way my pupils dilate, my reflexes are too jumpy, have L'Hermettes's, Marcus Gunn phenomena, the babinski reflex, none of which could be faked.  Plus to mention, who would ever put themselves through this torture on purpose??? Want to know if anyone else has had a physician give up on them or tell them it is psychological because I don't fit the textbook case for MS.  Thank you for any insight you could possibly give me.  I guess I need a new neurologist.

[erpatti]

sorry to hear you have so many symptoms. Have they ever given you a diagnosis??  Sounds like you have findings they can see.  I have always {besides 2 small lesions on MRI} and a fast pulse had symptoms that were totally subjective.  My eyes are painful, dry and feel weird, but nothing is wrong. On lab tests I  look so healthy, but I feel sooo bad. I actually went to a psych. , what have I got to lose I just want to feel better. He didn"t know what to do with me either. So my diagnosis is ??seroneg lyme ??fibromyalgia  ?? chronic fatigue. If I ever try to go out on perm disability , it would be a joke. If anything a psych will try to help you cope with the unknown .