Slowly Progressive MS

[young at heart]

I was diagnosed with slowly progressive MS.MRI findings were 1  lesion occipital area with cortical atrophy,advanced for age.LP--highly elevated MBP.Babinski-present,romberg-positive,no abdomal reflexes,hyper reflexes,absent in rt ankle.Suffer from spasticity.Intolerant with heat.Numbness in fingers,face and feet and calves.RT leg effected,wear AFO.Blurred vision,fatigue and off balance.Hands and feet go numb when they are in hot water.I had 2 attacks ,December and January heat related,hot shower and fireplace,which resulted in lossing balance,blurred vision,1 passing out.(stroke was ruled out)
I have had several test,majority done at the Cleveland Clinic Neuromuscular Building.Awesome DR.They originally thought my symptoms were of muscular origin after EMG and numerous blood test,this was ruled out.They have ruled out B12 and folate,sjorgens,lyme,thyroid,lupus.
Have my DRs.jumped the gun,this has been going on for 18 months,the symptoms I have don't leave they can lesson,but always present at some degree.The medical evidence don't meet the McDonald criteria's,I don't want to start treatment for something that may not be there.The Drs told me this is the only possible illness that could be causing this since I had transverse myelitis and optical inflamation in 1998 and had been symptom free until 18 months ago.Any insight would be appreciated.Just lost and confused.

[young at heart]

I'm 3 hours from the cleveland clinic,west of pennsyvania.Lyme was excluded from the cleveland clinic and the mayo clinic.You'll get great results from the mellen Institute.Not only do they rule yea or ney on MS they do check for other immune disorders.Wish you could get in sooner.There technology there is state of the art.

[young at heart]

I went a year and a half with more questions than answers.Have you ask your neuro why he doesn't suspect MS.Ask him to do a LP.It can confirm MS and can exclude other diseases.The neuropsycologist can aide in testing also.Many peolple who have MS also have other disorders even fibro.Hang in there.

[patsy10]

I have very similar, continuous symptoms as you but they can't find anything wrong.  My MBP was low normal but I still have the symptoms.  I have an appt. in AUG at Mellen center.  I don't know what I have but it's bad.

I could be wrong, but I presume you live in Ohio as I do since you said you were seen at CCF.

Doctors tell us we're not at risk for lyme in this area but Western Pa is endemic and is about 1.5 hours from me.  There's no way ticks stop at the border.  I had 3 bullseye rashes that I got walking in the local metroparks.

Not saying you have this though.

[patsy10]

5 cm.  That's 2 inches.  I would consider looking into lyme as well.  Especially since fibro and lyme go hand in hand.

[attheendofmyrope]

I should point out that I am 45 years old and I have also been diagnosed with fibromyalgia. My husband is retired military so I see doctors that they allow me to see. I am currently trying to get an appointment with a neuropsychologist as my neurologist thinks that would be the best next step. I have done some checking and find that a spinal tap is a good procedure to help rule out other things. Right now my biggest problem is that I feel like I only have more questions without answers.

[young at heart]

I would collect my mri films and honestly seek a neurologist that specializes with MS.Contact your local MS society for help.Have you read the mri report.
MS is a diagnosis of elimination.Has you current neuro done any other testing.Lumbar puncture,evoked potentials?
I had seen 3 neuro's before one done the testing.Now I'm left with symptoms that don't leave.There are meds that can treat it,not cure it.Get informed.But honestly find a Doctor that will help you.The Cleveland Clinic is fantastic.

[attheendofmyrope]

I had an MRI done in February where they found 1 lesion that was 2 cm in the right pariatal lobe. They repeated the MRI in May and found 7 or more lesions, this time there were at least 3 on one side and 4 on the other with the largest being 5 cm in the frontal lobe. My neurologist was concerned it might be MS, but after asking me a couple of questions told me it was not MS. Can he really tell without further testing?

I have been having problems with forgetting where I am and people are always telling me I don't walk straight. Things don't always travel from my brain to my hands. I do repeatative work and sometimes I cannot do something I've done a hundred times that day or for an example: I was writing an "S" on several things and even though I was looking at an "S" I had just written, I couldn't write the next one. I would appreciate any ideas.

[young at heart]

The lyme test was done twice,at the Cleveland Clinic and labs sent to the mayo-clinic.I'm not in an area where lyme is a threat.yes, I'm aware of lyme test being false positive or positive false.

[patsmad]

This always seems to pop-up on these neuro forums, but where were you tested for Lyme? You may already know this, but Lyme testing isn't very accurate, even if you get tested at IGeneX labs (in California). Evidently, only 22% of confirmed Lyme cases test positive. I was tested at IGeneX, and a Lyme-literate doc in Colorado told me that 3 positive bands in my test were Lyme-specific. I'm going to go there before I go to a University hospital (I do actually have an appt. at the U of Denver Neurosciences Clinic). From what I've learned, these hospitals/teaching centers are very quick to dismiss Lyme, especially if tests are negative. This is all new to me, but it seems to make sense. I don't know. Just something to consider.

[young at heart]

The diagnosis was made on the exclusion of all other diseases were ruled out.Neurological test,babinski,romberg,hyperreflexes and absent rt ankle reflex,the lumbar puncture showed  highly elevated myelin basic protein.In 1998 had lumbar myelitis and optical imflammatiom,symptom free until 18 months ago.Symptoms have progressed and my legs have been effected.Brain MRI shows 1 lesion along with bilaterial occipital atrophy.The progression is slow,but the symptoms are always present at some extent.Other symptoms present are numbness,weakness,primarily in legs,off balance,blurred  and double vision,tingling,chronic spasticity.I have had episodes of lhermittes,which have resolved.PPMS,effects the legs first.Hang in there MS is diagnosed on exclusions and lesions can appear down the road.Have you been to a teaching clinic?There expertise and facilities are awesome.

[patsmad]

I've been suffering from many symptoms (from clonus to numbness to l'hermitte's sign, etc) for 1 year, and I don't have any lesions. But I was wondering if all you have is the one lesion, and how are they able to tell you have PPMS if you only have one lesion?!? I'm worried I have PPMS, but they don't know if I even have MS. Did they diagnose you with PPMS because your symptoms have been continuous? Everything I've read about diagnosing PPMS says you have to have 9 lesions in brain or 2 in spinal cord (McDonald Criteria), and basically how the disease behaves/progresses in the first 3-5 years. Just curious what they told you.

[young at heart]

Thank you very much, I was diagnosed with PPMS.

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

The Cleveland Clinic Neuromuscular and Multiple Sclerosis neurologists are top class, so I would not dispute their opinion.
The McDonald criteria are for relapsing-remitting MS, and there are different diagnositc criteria for other forms of MS like primary progressive MS and neuromyelitis optica, which we even feel may be different disease to regular MS - they do not repond to the interferon treatments

Secondary MS is part of the relapsing-remitting MS spectrum and may still be responsive to interferons. I cannot tell from teh post what form of progressive MS you have (prinary or secondary).Secondary progressive MS just means that it started out meeting the McDonald criteria etc but has become progressive over time.

If you have not been referred to the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, I would consider asking for this, as they like to follow the MS patients seen at the Cleveland Clinic.

Good luck