A ? for any HSP/neurologist folks here

[Ian B]

Hi All,
I was dignosed with Hereditary (Sporadic in my case) Spastic Paraplegia a few years back, and prior to the diagnosis, I had a lumbar puncture which showed proteins that I was told usually indicate the onset of MS. In my case, MS was ruled out due to there being no lesions on the spinal cord.

I've recently found out the proteins were 'elevated oligoclonal bands', which as far as I've been able to find out, is not linked to HSP. I don't know the actual level at this moment. Now, I'm basing that assumption on my laymans reading of the info I've found, so my question is, is this symptom normally linked to HSP?

Ian

'EDIT'
Hmmm, probably should be in the Care forum, not here.

[SCI-Nurse]

Oligoclonal bands are commonly found in the CSF of people with MS, but can also occur in other conditions. Here is a partial list:

http://www.diseasesdatabase.com/resu...ClassSort=True

MS is often diagnosed only by MRI, but it is not uncommon, esp. with Primary Progressive MS to have no lesions seen on MRI early in the onset of the disease. Spinal cord lesions are less often seen than brain lesions. Was this MRI done with contrast (usually gadolinium) shortly after an attack or progression of your symptoms? Have you had more than one MRI? Did you have both brain and spinal cord MRIs? Have you had a VEP? How old are you? Were you seen by a neurologist who specializes in MS?

Currently, the McDonald Criteria for making the diagnosis of MS are used internationally. Here is a resource to see the criteria:

http://www.mult-sclerosis.org/DiagnosticCriteria.html

Note that lesions on MRI are one of the criteria, but are not required in place of other tests or symptoms that are suggestive of MS.

It can be difficult to determine a diagnosis of MS vs. Heriditary or Sporadic Spastic Paraplegia as the symptoms are very much the same. SSP is not associated with abnormal CSF findings though, as it is considered a genetic, not an autoimmune disease like MS. You can get more information about SSP here:

http://www.sp-foundation.org/index.html

I would recommend that you get a second opinion. You may also want to check out the MS Forum at www.braintalk.org . While it is not moderated, it is an excellent resource and one of the largest on-line communities of people with MS in the world.

(KLD)

[Ian B]

Originally Posted by SCI-Nurse

Oligoclonal bands are commonly found in the CSF of people with MS, but can also occur in other conditions. Here is a partial list:

http://www.diseasesdatabase.com/resu...ClassSort=True

MS is often diagnosed only by MRI, but it is not uncommon, esp. with Primary Progressive MS to have no lesions seen on MRI early in the onset of the disease. Spinal cord lesions are less often seen than brain lesions. Was this MRI done with contrast (usually gadolinium) shortly after an attack or progression of your symptoms? Have you had more than one MRI? Did you have both brain and spinal cord MRIs? Have you had a VEP? How old are you? Were you seen by a neurologist who specializes in MS?

Hi KLD,
MS was a first guess/diagnosis, the neuro I saw told me the proteins found "are usually indicative of the onset of MS, or cancer, but in both cases they can be ruled out" The next suggestion was Syringomyelia, but scans soon ruled this out as well. I've been see by several neuros, and had more MRI scans than I care to remember, all came back clear or inconclusive. I'm 47 and my symptoms have been lifelong, progressive for as long as I can remember, almost imperceptably so.
Here's the relevant part of the report from my last visit to see a neuro

'Previous investigations have included MR of brain and cervical spine stated to be normal. CSF showed negative oligoclonal bands but elevated protein actual level not known. Visual evoked potential previously normal.
On examination he was well but anxious. Cranial nerves are intact including fields and fundoscopy. In the limbs there was increased tone of the spastic type, more marked in the lower than the upper limbs. Reflexes were absent at biceps and supinator, but brisk elsewhere. Plantars flexor. Power was full in the upper limbs, but he had an asymetric paraperesis more marked on the left than the right, with reduction of knee flexion 4/5 bilaterally, and ankle dorsi-flexion 4/5 on the left. Sensation was intact to all modalities in the limbs'

I suggested my symptoms were more in line with Cauda Equina Syndrome, but was told the 'dermatonal packing would not fit' due to my arms/fingers also being affected, albeit only slightly. I have occasional arm spasms and all the fingers on both hands flex involuntarily.

Originally Posted by SCI Nurse

Currently, the McDonald Criteria for making the diagnosis of MS are used internationally. Here is a resource to see the criteria:

http://www.mult-sclerosis.org/DiagnosticCriteria.html

Note that lesions on MRI are one of the criteria, but are not required in place of other tests or symptoms that are suggestive of MS.

It can be difficult to determine a diagnosis of MS vs. Heriditary or Sporadic Spastic Paraplegia as the symptoms are very much the same. SSP is not associated with abnormal CSF findings though, as it is considered a genetic, not an autoimmune disease like MS. You can get more information about SSP here:

http://www.sp-foundation.org/index.html

The HSP diagnosis, has been one of elimination, which due to the similarities between MS and HSP, I believe is 'normal' with cases of HSP. If it was MS, I would have thought it would have been confirmed by now.
I've been in direct contact with Professor John Fink@sp-foundation over this, via the Yahoo HSP support group, as I've also got other symptoms which simply don't fit HSP. Obviously, without him seeing me, he can't say much other than he isn't aware of these symptoms being recorded with any case of HSP.

Originally Posted by SCI Nurse

I would recommend that you get a second opinion. You may also want to check out the MS Forum at www.braintalk.org . While it is not moderated, it is an excellent resource and one of the largest on-line communities of people with MS in the world.

(KLD)

I've had several expert opinions over the past few years, and to be frank, none have been, 'Yes, this is definitely a case of .......' They can see what's wrong, but can't explain why things are as they are. It's a case of my having symptoms of both MS/HSP, but neither strong enough to be conclusive. Failing that, I must have some bizarre/unique presentation of either of them.

Thanks for your reply, you've given me plenty to read for the next few day's.

Ian