Origin of PPMS vs RRMS

Rokkit · Post by **Rokkit** » Mon Mar 22, 2010 8:58 am

newlywed4ever wrote:Dr Sclafani - you have moved me to tears with your compassion & expertise. Both myself (PPMS) and my daughter (RRMS) are on "your list" for dx & treatment. During the wait, I pray and learn - thank you!

This was a very interesting post to me but I didn't want to hijack Dr Sclafani's excellent thread so I started a new one.

Some scientists/neurologists think PPMS and RRMS may be completely different diseases. This has bothered me in light of CCSVI. If CCSVI is a big part of MS, and the CCSVI malformations are congenital, and heredity plays a role, then I find it very interesting that a parent with PPMS has a daughter with RRMS. I don't even really know what I'm trying to say here yet, and I have to go to lunch. Sorry. I think I'm trying to say that this is strong evidence (at least in one antectdotal case) that PPMS and RRMS are indeed just different manifestations of the same problem. Maybe I can make more of this later.

Rokkit · Post by **Rokkit** » Mon Mar 22, 2010 10:31 am

If parent and daughter both end up getting venograms it sure will be interesting to see if they have the same type of venous obstruction. Has anyone heard of other cases of family members with different forms of MS?

LR1234 · Post by **LR1234** » Mon Mar 22, 2010 10:39 am

It is interesting Rokkit. There are quite a few people on here who had parents with MS and who are now suffering themselves so if they could add to this that would be good. My aunt was RRMS I am supposed to be RRMS as I have had relapses that do remit however I have never had enhancement on MRI and I have sensory issues that are progressive and don't remit!

Merlyn · Post by **Merlyn** » Mon Mar 22, 2010 11:49 am

They have done studies on iron metabolism, people like me with primary progressive MS tend to have an elevated transferrin level no matter what. People with relapsing remitting have transferrin levels that jump all over the place. It is still all iron metabolism problems...

http://www.ncbi.nlm.nih.gov/pubmed/10685854

Transferrin in patients with multiple sclerosis: a comparison among various subgroups of multiple sclerosis patients.
Zeman D, Adam P, Kalistová H, Sobek O, Kelbich P, Andel J, Andel M.

Dept of Neurology, 1st Medical Faculty, Charles University, Prague, Czech Republic.

OBJECTIVES: To compare cerebrospinal fluid (CSF) and serum transferrin (Tf) concentrations, transferrin quotient and index in various subgroups of MS patients. MATERIAL AND METHODS: CSF and serum transferrin concentrations, transferrin quotient QTf (i.e. CSF transferrin/serum transferrin x 10(3)) and index (QTf/Qalbumin) were determined in a group of 51 patients with clinically definite or probable multiple sclerosis (MS). Patients were subdivided according to the disease form (relapsing-remitting = RR, secondary progressive = SP, primary progressive = PP; patients with RR form were further subdivided into those in the attack and those in remission), disease severity (EDSS 0-5.5, EDSS 6.0-10.0), its treatment (non-treated - including patients treated with vitamins and/ or vasodilators only, treated - i.e. glucocorticoids and/or immunosuppressants and/or (exceptionally) beta-interferon), disease duration (0-2 years, >2-10 years, > 10 years) and sex. Correlation of transferrin values with age was also performed. RESULTS: Serum transferrin was somewhat lower and significantly more frequently subnormal in PP patients in comparison with the SP form and the RR form in remission. Transferrin index was significantly higher in the PP form than in the RR as well as the SP form. Transferrin quotient was significantly more frequently subnormal in patients in remission compared to those in the attack of the RR disease. CSF transferrin as well as transferrin quotient were more frequently subnormal in patients with short disease duration (0-2 years) than in patients with longer disease duration; these parameters, however, correlated also significantly with age. CSF transferrin and transferrin quotient were higher in male than in female patients. CONCLUSION: The authors conclude that evaluation of transferrin in MS patients - along with albumin - may help to differentiate among various MS subgroups, since there are significant differences among RR, SP and PP forms. For this purpose, however, other CSF protein fractions should be evaluated in parallel in order to obtain more complex information and to establish a panel of examinations enabling multiple statistical analyses. Transferrin evaluation in MS may also be of significant theoretical interest, since transferrin is known to be involved in the regulation of iron metabolism and it may have a protective role against the oxidative stress. Moreover, transferrin is a growth factor important for proliferation of activated T lymphocytes. By means of the use of transferrin quotient and especially transferrin index, it may be possible to estimate the proportion of intra-CNS-synthesized transferrin and/or rate of specific transferrin transport across the blood-CSF barrier. Further studies are, however, needed for such an evaluation.

Rokkit · Post by **Rokkit** » Mon Mar 22, 2010 12:08 pm

Merlyn wrote:They have done studies on iron metabolism, people like me with primary progressive MS tend to have an elevated transferrin level no matter what. People with relapsing remitting have transferrin levels that jump all over the place. It is still all iron metabolism problems...

No, let's focus on venous obstruction in this thread, please. Thanks.

My venogram showed the same type of obstructions as those the RRMS people were having. This surprised me because according to Dr Zamboni's research I should have been different, at least that's what I understood. The crux of the matter for me is am I fixed or do I still need to digging around my spine and lumbar plexus.

Johnson · Post by **Johnson** » Mon Mar 22, 2010 2:07 pm

Rokkit wrote:
Merlyn wrote:They have done studies on iron metabolism, people like me with primary progressive MS tend to have an elevated transferrin level no matter what. People with relapsing remitting have transferrin levels that jump all over the place. It is still all iron metabolism problems...
No, let's focus on venous obstruction in this thread, please. Thanks.

...

At the risk of starting writing out of turn (yet again), I just wanted to point out that Merlyn's comment was quite relevant to the thread title, if not to venous differences written about by Rokkit in the first post.

I think that the CCSVI/MS conundrum is hugely complex, and is not just about occluded jugular or azygous veins. What effect could iron metabolism differences play in the venous occlusion, if any? There must be room for other aspects. The neurological problems we have might be secondary to vein problems, which might be secondary to something chemical - as in blood chemistry. Perhaps the blood chemistry is secondary to something else, like genetics, exposure to toxins - who knows? Considering that, the neurological manifestations might already be 4 or five layers below the real issue. Thyroid? Pancreas?, kidney/adrenal? Hypothalamus? ...?

I found the NIH abstract fascinating, and pertinent, because it mentioned albumin - which I had very high levels of as a child of 7. Albumin is a protein (found in eggs), and if that is showing up in the blood, we get to leaky gut. What causes leaky gut? We might conjecture that the gut is unhealthy because of vascular problems in the azygous, vena cava, etc. Perhaps those vascular problems are caused by things in the blood that ought not to be there, and back to the gut, proteins, minerals (such as iron).

Thanks for bearing with me. Smile.

LR1234 · Post by **LR1234** » Mon Mar 22, 2010 2:42 pm

On the note of albumin and proteins....I have just started taking proteolytic enzymes to help break down the excess proteins that us MSers seem to have in our blood stream. I might start a thread in the natural approach section on this. Apparantly they have a strong anti inflammatory action and help the body break down these harmful proteins back into amino acids where they can be excreted.

Johnson · Post by **Johnson** » Mon Mar 22, 2010 4:43 pm

LR1234 wrote:On the note of albumin and proteins....I have just started taking proteolytic enzymes to help break down the excess proteins that us MSers seem to have in our blood stream. I might start a thread in the natural approach section on this. Apparantly they have a strong anti inflammatory action and help the body break down these harmful proteins back into amino acids where they can be excreted.

Please do. I have a fair bit to contribute to that thread (I think).

bmk1234 · Post by **bmk1234** » Mon Mar 22, 2010 5:52 pm

Rokkit wrote:If parent and daughter both end up getting venograms it sure will be interesting to see if they have the same type of venous obstruction. Has anyone heard of other cases of family members with different forms of MS?

My mother has MS - RRMS, her sister has MS - not sure of the specific kind, but is wheelchair bound, my brother had progressive MS and was in a wheelchair at this death. I have RRMS, I get around just fine. So out of the 4 of us, two with progressive types (in wheel chairs), 2 with RRMS.

Rokkit · Post by **Rokkit** » Mon Mar 22, 2010 6:12 pm

Johnson wrote:At the risk of starting writing out of turn (yet again), I just wanted to point out that Merlyn's comment was quite relevant to the thread title, if not to venous differences written about by Rokkit in the first post.

It was my fault, I chose a terrible title for the thread. I didn't mean to be insensitive to Merlyn, I was just in a hurry. Sorry.

Zamboni has talked about PPMS being different in terms of more azygous involvement, agenesis of lumbar plexus veins, etc. I was just wondering if newlywed4ever's situation might be a case where a child could have inherited the same venous obstruction issue, yet the MS manifested as a different form.

bmk1234 wrote:My mother has MS - RRMS, her sister has MS - not sure of the specific kind, but is wheelchair bound, my brother had progressive MS and was in a wheelchair at this death. I have RRMS, I get around just fine. So out of the 4 of us, two with progressive types (in wheel chairs), 2 with RRMS.

That's very interesting. Are there any plans yet for any of you to get tested for CCSVI?

ozarkcanoer · Post by **ozarkcanoer** » Mon Mar 22, 2010 6:49 pm

Just a short comment. I have been diagnosed as RRMS. But I don't relapse or remit. I have more like sine wave symptoms mainly in my head/neck area. Terrible fatigue, headaches and tender pain below my skull. So I wonder how well defined the differences between RRMS and PPMS really are. BTW I have about 40 brain lesions and positive O-bands so I guess I have the clinical signs. I just don't understand the whole RRMS/PPMS at least as far as it applies to me. I often wonder if MS experts really do too.

ozarkcanoer

bmk1234 · Post by **bmk1234** » Tue Mar 23, 2010 6:51 am

Rokkit wrote:
Johnson wrote:At the risk of starting writing out of turn (yet again), I just wanted to point out that Merlyn's comment was quite relevant to the thread title, if not to venous differences written about by Rokkit in the first post.
It was my fault, I chose a terrible title for the thread. I didn't mean to be insensitive to Merlyn, I was just in a hurry. Sorry.

Zamboni has talked about PPMS being different in terms of more azygous involvement, agenesis of lumbar plexus veins, etc. I was just wondering if newlywed4ever's situation might be a case where a child could have inherited the same venous obstruction issue, yet the MS manifested as a different form.

bmk1234 wrote:My mother has MS - RRMS, her sister has MS - not sure of the specific kind, but is wheelchair bound, my brother had progressive MS and was in a wheelchair at this death. I have RRMS, I get around just fine. So out of the 4 of us, two with progressive types (in wheel chairs), 2 with RRMS.
That's very interesting. Are there any plans yet for any of you to get tested for CCSVI?

My Aunt and I are on 4 different lists to get tested for CCSVI. I'm told the wait is in months and not years.

newlywed4ever · Post by **newlywed4ever** » Tue Mar 23, 2010 4:14 pm

Rokkit - I was glad to see your thread as a result of my post to Dr Sclafani. I, too, am most curious and sad that MS reared its ugly head in my daughter's life. I seem to be a bit of an anomaly (story of my life

) as the neurologists I've seen act like I must have had RRMS and didn't know it until it turned into PPMS. BUT I have never had relapses & remissions - just a steady decline/progression. My daughter (RRMS) was dx in 2009 after one episode/relapse. I will continue to follow this thread - thank you!

berriesarenice · Post by **berriesarenice** » Tue Mar 23, 2010 4:36 pm

Rokkit wrote:If parent and daughter both end up getting venograms it sure will be interesting to see if they have the same type of venous obstruction. Has anyone heard of other cases of family members with different forms of MS?

Great thread, Rokkit.

I am the only one in my family diagnosed with MS so far (RR), but 3 of my siblings have suspicious symptoms, and are going to get Doppler testing with me in Poland in a couple weeks. I'll report back what we find.

Cece · Post by **Cece** » Tue Mar 23, 2010 4:57 pm

[quote="ozarkcanoer"I just don't understand the whole RRMS/PPMS at least as far as it applies to me. I often wonder if MS experts really do too.[/quote]

I think you're right...there seems to be some people who are obviously PPMS and others who are obviously RRMS and then there's middle ground and outliers and who knows? I think the neurologists will also keep people in the RR category because at least there are drugs that can be taken if you're RR.