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a bunch of MS-like symptoms

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
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Avatar universal
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....
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Avatar universal
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 .
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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.
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Avatar universal
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??
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Avatar universal
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
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Avatar universal
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...
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Avatar universal
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???
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Avatar universal
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.
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Avatar universal
Great article generated by Malden1! Thanks!
http://drcranton.com/CFIDS.htm
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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...
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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.
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Avatar universal
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!!
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Avatar universal
FYI, the recommended lab for Lyme testing is Igenex.  Good luck!  erin
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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
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Avatar universal
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.
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