ms vrs ??lots of symptoms

[maxat7]

hi im hoping that someone might be able to help me that has or is going through the same thing. i have had many symptoms for months ranging from pins and needles to numbness, fatigue, balance problems,electric shock feelings in my body,and servere pain that can be in my calf muscle,one finger,upper arm and other places aswell as other things going on. i have had every blood test imaginable taken,ct of brain and neck,spent a week in hospital after colapsing with right side weakness had an mri of brain told by doctor that he was sure the results showed i had ms, when neuro looked said it was migrane related. have been seeing physian put it down to exhaustion and prescribed endept to sleep and for pain.went to see doctor that saw me in hosp yesturday and said that ms had been totally ruled out and i had them all stumped but is repeating the mri to see if there has been any prgressive demylating occured in the last three months. he also asked if im depressed which i have been asked before i told him that i am happy to go and see someone to rule this out as he thinks that it might be in my subconsious but when i asked him if that could cause the pain he said no. so basicaly im just fed up and not sure what to do. oh he also told me to go of the endep and not go back to physian as it wasnt doing any good. where i live there is limited specialist and i have been told to go to the mainland and seek help there but only want to do that as last resort.i dont want to be diagnoised with ms but can they completly rule it out after only one mri of your brain.

[nikko222]

Hi Max,
I'm not sure, but I don't think only an MRI of the brain is diagnostic of MS.  The docs also usually recommend a spinal tap and vision evoked potentials?? along with the MRI with contrast. I just posted for the first time here the other day.  I have all your sx, been going on for 1.5 yrs now...most days I feel just awful.  Have muscle twitches all over too. Feel o.k for a week or two and then bang!  Had MRI of brain last yr w/o contrast (neg) and just went to see a differenct neurologist today.  They ordered: MRI of brain and C spine with contrast and without, EEg evoked potentials, balance tests, EMG and then spinal tap will be done.  Lots of blood work too. Like you, I have had all kinds of blood work previously...all negative except I tested positive for toxoplasmosis.Too often when nothing comes out positive, they want to pin it on stress.  But we know our own bodies, don't take No for an answer, keep searching.  I have no significant medical/surgical hx, and have always been very active and healthy up until 1.5 yrs ago. I just hope they can dx me at some point...so I can get on with the appropriate treatment.  I  hope it will be the same for you. Have you been testd for Lyme disease also?  Have you had a spinal tap?

[maxat7]

thanks nikko no the only test they have done is the mri of my brain, thats why i find it hard that they can exclude ms, and it makes me wonder why now 3 months later they want to do another mri to see that there is no progressive demylation occurring. i dont think that i have been tested for lyme disease not sure what the procedure is for that

[lat67]

Hey Max,

Sorry to hear about all this crazy stuff you are going through. Wanted to give you my two cents worth.

As far as the MRI it is a very good sign that nothing showed on your MRI as far as being dx with MS.  To have the symptoms you have, which I have had for two years, would indicate a later stage of MS and would certainly show on an MRI.  This information was given to me by one of the best MS specialists known worldwide.  Infact with me he said I sounded very much like lyme disease. I would certainly go ahead and have the testing they offer you as a way to rule out everything.  I know that the neuroligist told me I was depressed and it was stress.  I have huge issues with that because she simply did not believe I was sick.  I went from trainning for marathons to not being able to walk properly.

My story is I wasted way to much time on going from specialist to specialist.  I was finally dx in May with lyme disease from a LLMD.  I am now being treated and hope to get better.

I can not stress enough, because of my own experience, not to waste any time.
Heres my email if you want any information on how to get properly tested.
***@****

Hope you get some answers.

Lesley

[S. Walker]

Hello everyone and thank your for all your information. Of course I am here becoues like all of you everything in going on with me. Was tested with MRI about 5 years ago. Symptoms come and go. Im good for months althouth never no symptoms. Then out of no where symptoms come back. Drs tell me nothing wrong. Im an older female and know my body. Last two months periodiocly am now having to drag my feet to even walk, this isn't often but several times and I know this isn't right. Never tested for lyme and when I go back to the drs will ask for this to be done. I like all of you just want to find out what is going on in my body. God bless all of you. S Walker

[Annie62]

Maxat,

I don't think your doctor has ruled out MS or else he wouldn't be doing a repeat MRI of the brain in three months to "see if there is any demyelination" (sorry, not sure of your exact words).  I previously asked the same question on this board with regards to how long after the onset of MS symptoms can one have a negative brain MRI.  I think you said your symptoms were only going on for a few months, so you most definitely can have a negative brain MRI and still have MS (a few months isn't that long); it doesn't always show up on MRI right away.  There was one person on this board whose MS lesion(s) didn't show up until two years after the start of her symptoms if I remember correctly, and she was dxd with a lumbar puncture initially.  Sometimes the lesions heal over, especially in the beginning.  I have had symptoms (some minor, some more severe) for at 12 1/2 years consistent with MS and had a negative brain MRI as of 4 years ago.  (I never had evoked potentials or a lumbar puncture, though).  From my reading, this length of time makes it very unlikely that I could have MS, but I am still being referred to an MS specialist at a medical center next week because my symptoms are consistent and I most definitely have something neurologic/autoimmune going on and have continued to aquire new symptoms over the years.  

You sound like you are getting a timely work-up and your doctor is not hestitant to do tests, which is good, so hopefully time will tell, though I hope for your sake it is something more benign than multiple sclerosis.  Best wishes to you.

[mineandours]

HI. I'd revisit the Lyme issue if you don't get any answers. You can have a flaming case of it and still test negative in BOTH blood and spinal fluid.  It's a very tricky bacteria. The only way to be properly tested and treated is to see a Lyme specialist.  Here's a sx list for you. (I was once a "possible MS" diasnosee but it turned out to be neuro-lyme, complete with brain lesions.)

Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain

Neurological System
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Sudden jerking of fingers or entire limbs
Pain in spinal column

General Well-being
Unexplained weight gain, loss
Extreme fatigue
Swollen glands
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well. (If it was mild, you may not even recall this.)

Eyes/Vision
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Flashing lights
Optic neuritis

Ears/Hearing
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears (tinnitus)
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)

Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Heart blockage


Psychological well-being
Mood swings, irritability, rage
Unusual depression, panic
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
TMJ – sudden onset
Sore throat, hoarseness
Loss of sense of taste
Difficulty swallowing, throat spasms

Females only:
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge

Males only:
Testicular or pelvic pain

LYME FACTS
1. You do not have to recall a bite or have gotten the target rash to have Lyme disease. Less than 50% of people with Lyme do.
2. The tick that carries Lyme is as small as the period at the end of this sentence and their nymphs are nearly microscopic. Ticks are on the move at 35ş and above. It’s a year-round problem.
3. You do not have to experience ALL of these symptoms to have Lyme disease. It is also typical for many of these symptoms to come and go or occur once and never occur again.
4. It is possible to have Lyme disease and have a negative test result. After Lyme bacteria enters your system, it tricks your immune system into no longer producing antibodies to fight it, hence, a negative test result. There are also other numerous factors that can affect the results.
5. Lyme bacteria hide in the spinal fluid, bone, tendons, muscle and nerve fibers and tissues and in many cases are not “floating” around in the bloodstream where they can be picked up on a test. It is a cousin to the syphilis bacteria and very difficult to eradicate.
6. It takes a LYME SPECIALIST to diagnose, test for and treat Lyme disease and any of its associated co-infections. To find one go to www.LymeNet.org. or www.ilads.org. Lyme specialists do not require a referral.

NOTE: Everyone may have symptoms that appear on this list; however, it does not mean he/she has Lyme disease. If one has numerous symptoms on this list and no other explanation for them, consider Lyme.

[marRachel]

Check out ms symptoms from quinolone antibiotics...cipro, avelox, levoquin etc....I learned the hard way.