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Postby tara97 » Fri Jul 24, 2009 12:15 pm

I was posting all over the place last month. i just wanted to let you know that I finally recieved my dx of CIDP. IVIG therapy for me.
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Postby jimmylegs » Fri Jul 24, 2009 12:29 pm

heya tara, must be a relief to know what you are facing.
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Postby Bubba » Fri Jul 24, 2009 1:14 pm

What is CIDP? :?
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Postby Lyon » Fri Jul 24, 2009 1:51 pm

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Last edited by Lyon on Sat Nov 26, 2011 11:15 am, edited 1 time in total.
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Postby gainsbourg » Fri Jul 24, 2009 4:32 pm

CIDP was often misdiagnosed as MS before brain scans. It is basically when demyelination occurs in the peripheral nerves rather than CNS nerves, i.e. the brain and or spine. The symptoms are often very similar to MS including numbness of extremities, balance problems, fatigue and heat intolerance. It's much rarer than MS.

What interests me about CIDP is that it demonstrates that demyelination/ongoing nerve damage can occur on EITHER side of the blood brain barrier. Understanding this illness may give us more clues about MS. As with MS, high levels of protein in spinal fluid suggest autoimmune activity.

Another interesting thing is that a well known acute form of CIDP, Guillain-Barré, is now acknowledged to be frequently preceded by viral attack from the likes of cytomegalovirus, herpes, Epstein-Barr, and hepatitis.

If limb reflexes are completely absent, it often indicates CIDP.


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Postby patientx » Fri Jul 24, 2009 5:39 pm

This is interesting. With CIDP, how do the doctors determine that the peripheral nerves are experiencing demyelination?
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Postby tara97 » Fri Jul 24, 2009 6:24 pm

they do an emg, lp or even nerve biopsy. when axon damage occurs I think it reroutes or sprouts or something and causes an onion bulb formation it is indicitive like lessions are for ms. and yes i said nerve biopsy I know gross huh? the important thing is that I found an awsome doctor through the gbs/ cidp forum who sat with me for over 30 min talking to me about my symptoms. he is a neuropathy expert.
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Postby patientx » Fri Jul 24, 2009 7:04 pm

That's awesome that you found this doctor. How did you know to look on a CIDP forum?

And how do they do the nerve biopsy? That's painful just reading about it.
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Postby tara97 » Fri Jul 24, 2009 9:14 pm

I had GBS the acute version of cidp and I have thought it was five years ago but all the neurologists lined up to beat the dead horse testing me for MS. all negative tests for it from the MRI's, lp, and vep but still they cant think outside the box. I had to look at well there is alot I dont know but what do I know. I know that I have been diagnosed with a neurological problem in the past so I went backwords from there. I looked up GBS in the mercks medical manual of all places and found out that about %10 of GBS patients go on to have the chronic version and from there I researched on the internet and I almost started to cry the symptoms fit so perfect. symetrical numbness, weakness, boring, burning pain radiating down the neck into the outer extremities, difficulty climbing stairs, relapse remitting pattern it went on and on. I went on to tell my neuro at the time and she scoffed and said no probaly not I accepted that answer. I was too young to understand that doctors are fallable humans who dont know everything and you have to fight even through the buearocratic pile of sh#$ that is our health care system. this time around they thought it was MS again and I thought ok must be then I had a normal MRI. I started back with my original hunch and when on the GBS/CIDP foundation site.
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Postby catfreak » Sun Jul 26, 2009 6:25 am

Hi Tara97,

Sorry to hear your dx but glad the battle to find out what is wrong is over for you. It is almost a relief, it was for me anyway, to get that out in the open after many years of not knowing.

I met a lady when I was having my 4th Tysabri infusion and she was having here IVIG infusion. I take for granted that everyone is having Tysabri infusion and she said something about being there all day. I asked why and she said well I have GBS and the IVIG takes all day. I learned never to complain about my 2+ hours getting my Tysabri.

Please let us know how things are going for you. I will pray you do well with your IVIG.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby euphoniaa » Tue Jul 28, 2009 4:13 am

gainsbourg wrote:What interests me about CIDP is that it demonstrates that demyelination/ongoing nerve damage can occur on EITHER side of the blood brain barrier. Understanding this illness may give us more clues about MS.
gainsbourg


Hi Tara, and I wish you well with your dx & treatment! I did think I should make a comment to you & gainsbourg about my own situation. I've been dx'd with both MS and a hereditary peripheral neuropathy, HNPP (my dad's had the genetic testing for it). Here's some info:
http://ghr.nlm.nih.gov/ghr/disease/here ... repalsies/

So...I've been told I have 2 degenerative, demyelinating diseases at once and a missing myelin gene. Although the 2 conditions aren't related and HNPP is rare (probably underdiagnosed), I wish someone would do a study on my family. My dad and a cousin have HNPP only, another cousin has MS only, and I'm told I have both. Maybe I'm the missing link!

My MS is one of the most definite my neuros had ever seen, so that's not an issue. And another interesting note - the myelin in the CNS and the PNS come from two different types of cells. I'm always suggesting these hereditary conditions (see the website) as possible diagnoses, but they're never listed as MS mimics and few docs even seem to know much about them.

I'm sitting here typing with currently numb fingertips, entirely due to taking yoga with HNPP. It will go away soon. :) That's how I know it's not the MS.

Good luck!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby peekaboo » Tue Jul 28, 2009 11:06 am

Tara - It is good that you finally know your dx...I can't fathom how many people could be misdx'd because the symtems are so similar. For the folks on TIMS who haven't received a commiting dx...should read this to help narrow it down.

I wonder why it only effects the PNS and not both PNS & CNS. The PNS from what I understand :? shoots our from the CNS or why MS only has CNS issues.
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Postby gainsbourg » Sat Aug 01, 2009 9:46 am

Hi Euphoniaa,

As you know, I am sure that looking more closely at similarities between MS and CIDP could help solve a mystery or two.

Interesting that you have both MS and a form of CIDP (HNPP) which I had never heard of before - and also that someone else in your family has MS.

Are MS and CIDP truly unrelated? They have so many symptoms in common - even extrermely unusual things like severe intolerance to heat or humidity.

I just read that people with HNPP tend to get Carpal Tunnel Syndrome. That intersts me because they have recently started saying that this syndrome may be linked to poor circulation after all...just like some are now saying about MS.

What people tend to forget because of all the complex science we now know about MS is that it is basically chronic inflammation of the nerves. There are many inflammatory neuropathies both of the CNS and PNS but the initial cause or trigger of the inflammation in MS is unknown. Not so with many forms of peripheral neuropathy, so maybe we can learn from looking at them.

We know that some types of inflammatory neuropathy are caused by toxins, e.g. excess sugar in the blood (diabetic neuropathy), or heavy metal poisons - nerves hate excess toxin in the body.

Viruses and disease release toxins in the blood which can cause neuropathy. I notice that you (or was it Tara?) say you have become intolerant to alcohol...the obvious suspect here would be the liver but I think the toxicity from alcohol, and toxins from flu type illnesses can be devastating due to the instant effect they seem to have on damaged nerves.

Faulty metabolism can also harm nerves (e.g. it was discovered in 2001 that poor metabolism of iron due to a defective gene is the sole cause of Friedreich's Ataxia) and I have long suspected that faulty metabolism may be a factor in MS.

Nerves seem to hate stress. At present I do not believe there is any way of checking whether stress (or any emotion) cause nerves to inflame, short of doing a biopsy during a stressful period - but that doesn't mean the damage isn't happening. Does stress bring on flare ups of CIDP like it often does in MS?



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Postby tara97 » Sun Aug 02, 2009 8:52 pm

I dont think many answers are going to come to MS through CIDP studies because you would be lucky to find a GP who has even heard of it. only 25,000 people have it in the country and we just got our first famous person aflicted last year. refrigerator perry. they also believe that guillian barre syndrome is really what caused FDR's paralysis. so not much attention is payed to it. I think it is the CIDPers who are hoping on an MS break through.
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Postby gainsbourg » Mon Aug 03, 2009 4:13 am

Hi Tara,

Coincidentally, since this thread started there has been a lot of stuff in another topic on this forum lately about the link between EBV (glandular fever) and MS. Apparently it has now been established beyond doubt that people who have never been infected with the Epstein-Barr virus (no traces in the blood) do not get MS.

Maybe this discovery will prove to be the start of a massive break through.

It's long been known that there is frequently an association between the Guillain-Barre syndrome and viruses/bacterial infection. This is because it is easier to look for an association due to the acute onset of GBS- the doctor can simply check to see if the patient has been ill recently. So often, there has been a recent infection, such as a herpes or a respiratory infection, that has cleared up - then GBS starts.

Maybe these bugs somehow weaken or attack nerves. Perhaps they somehow make them vulnerable to the crucial, unknown factor(s) which starts the nerve inflammation...whether it is in the CNS or peripheral nervous system.

Also, we know there is a link between herpes zoster (shingles) and nerves because people tend to get shingles just after they have been physically or mentally run down.


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