progressive MS?

[patsmad]

I've been suffering from many neuro symptoms for over a year continuously (from L'hermitte's to clonus to parasthesias in legas/hands/feet and difficulty walking). I'm being treated for Lyme (have a few positive Lyme-specific bands) and am taking high doses of cephalexin, but I'm still worried it's MS, despite 5 clear MRIs. I guess my main question is, if it is MS, does the long duration of all these symptoms indicate primary progressive MS? How likely is it to have so many symptoms continually/simultaneously for a year and their cause being MS?

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

I cannot give you a formal clinical opinion over the internet unforunately

There are two main forms of 'MS', which are though to be probably two different disease
Relapsing remitting MS, which by its name, implies that there are descrete episodes that last a few weeks, then go away, and recur. Over time there may not be full recoviery between these attacks
Primary progressive MS is more constant and progressive over time without remissions.

One must be careful though as there are several disorder including Lyme that can mimic MS, and one should be evaluated for these before the diagnosis of MS is established ie other spinal cord disorder or growths, sarcoid, infection, among others. Perhaps a second opinion at an MS center (such as the Mellen Center for Multiple Sclerosis at the Cleveland Clinic) could help make the diagnosis - effective treatment will depend on an accurate diagnosis

Good luck

[rcs2]

I'm sorry for your problems... I'm having paresthesias for one year too and know how tough it can be.
I was wondering how you got the Lyme disease diagnostics, did you have the skin rash? I wonder if I have Lyme too, I've been searching by myself what I could have (to be honest, I no longer trust in any doctor). I'm planning on seeing a neuro from an University (already went to 2 and they sent me home with this diagnostics - paresthesia... as far as I know this is a symptom).
I'm concerned about progressive MS too. Didn't you trust the Lyme diagnostics? Aren't you improving with the treatment?
I hope you feel better soon! Good luck!

[patsmad]

The reason I'm a little skeptical about the Lyme is that there were only 2 or 3 bands that were positive (had IGeneX testing, and technically it was "negative") even though they say that it's conceivably responsible for my symptoms. It's not definite. The oral abx I'm on take months to start to work, I guess, and it's only been about two weeks, so I'm being a little impatient. It just "feels" like it's MS, call it a hunch. I'm just a born pessimist (not that Lyme would be a picnic). I have an appt at a Univ Hospital in a couple months, but I'm afraid of what they'll tell me I probably have, and it's expensive.

[Pinky61]

5 clear MRIs makes MS rather unlikely. Do you have any other symptoms such as fever, joint pains, dry eyes, mouth ulcers, or anything besides the neuro issues?

[young at heart]

I've Had a few clear MRI's and my neuro done evoked potental and thats how the lesions were detected.I did have one in the occipital region,I didn't meet the McDonald criteria score,I have progressive MS.The symptoms fade but never leave.My first attack was 7 years ago and I was just diagnosed this month.
Go to your next appointment if your not happy with there results,seek a MS specialist,this is the only way to rule out MS.Remember a diagnosis of MS is based on exclusion and can be the only possible disorder causing your symptoms.

[crystaly]

What were you dx with before ms . I have an unknown neuro disorder 2 yrs . Symptoms have never left but new ones have added on this year. Why did ms not show up on your mri. Be grateful of some insight. Thanks Chris

[young at heart]

For starters my symptoms appeared after a lumbar surgery done in 1998,loss of vision bilaterally,loss use of arms and legs,my neurosurgeon done a mylogram a type of MRI using dye injected into the spine to see past metal implants,I had myelitis and optical neuritis,devics disease is what it was called.Neurosurgeon told me then I had MS,I dismissed it.After 2 years it cleared up and I didn't have a symptom until 2 years ago.It started with lumbar radicular pain,leg cramps turned into chronic spasticity,numbness,right sided weakness,drop foot,blurred vision,fatigue.And a host more.My brain and C-spine are clear at this point.The evoked potentals were delayed in visual and spinal track.Hidden lesions,Lumbar puncture was positive for myelin basic protein.I have had every test possible to rule out other diseases,lupus,lyme,B12 deficiency sjorgens,sclerderma,neuropathy,myeopathy,ALS.This is the only conclusion neuro could make and this came from the cleveland clinic.I'm following up with local neuro now,I am not taking any MS Drugs at this time except for baclofen,zanaflex,quinine and pain meds.I was not diagnosed with anything prior to this,I know my neurologist sent me to the cleveland clinic to rule out neuromuscular disease.I knew that this was negative do to previous blood test.Stay positive and listen to your body,somethings can never be explained.Sorry this is so long

[crystaly]

Thanks very much if you get the chance will you pop on the undiagnosed forum I will post a question to you if you wouldnt mind.  I don't want to piggyback on here I feel really cheeky . I do apologie  Patsmad. Chris

[Duchess47]

I have been having a lot of symptoms for over 1 year now.  I have had many tests too. Recently,  saw a Neurologist for the first time.  Due to my symptoms I had an entire MRI spine series.  My brain showed lesion in white matter.  Even though I have many symptoms, since there is only 1 lesion (although it's in the right place for MS), my doctor doesn't think I have MS. I have left eye inflammation with pain and double vision but no optic neuritis.  From what I understand, MS diagnosis is based on meeting certain criteria and I think one of them is at least 3 lesions in specific part of body.  My doctor wants me back in 6 months for another MRI or prior to that if I develop worsening or additional symptoms.

[Mihir Khandelwal]

Hi Duchess7,

I have a similar issue. I have a spinal cord lesion and my doctor has called me for another MRI 6 months later....
It gets a little tough for us as we are under constant anxiety.
Anyway hoping for a great life for you ahead without any problems...

Mihir Khandelwal