PLEASE! GBS and CIDP— lets help each other check this out!!!

1-8 no/none, at all. Wish I could have helped more?
Actually any possible ‘apnea’ disappeared after I got the CIDP! Go figure.
Plus? All ‘bruxism’ I had dissappeared totally for five years! Again, go figure.
Can I gather that these are issues you think mite have contributed to your CIDP?
Be careful, as soo many different histories and causes come out from here and elsewhere that it can be spooky at times? Not one person’s story is ever the same as another’s. Keep chipping away tho, YOU are getting to the roots of YOUR causes and resulting problems. Glean don’t survey…from others. We each have such varying histories that is part and parcel of what makes it soo hard to get diagnosed!

Oh, correct me on question #3 – Constipation! That has been included as a diagnostic aspect of CIDP in many articles. Tho why I don’t know? I wasn’t on pain killers before my onset other than tylenol.
Hope this helps even a little?

Here are my responses – I just typed them below after each questions

I actually have the following questions: for GBS or CIDP?

1. Were you diagnosed with sleep apnea before your diagnosis? NO
2. Did you require a use of a c-pap machine? For how long? NO
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? YES – gall bladder and then IBS
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? YES – Flu
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? No
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? NO
7. Are you a nail biter? NO
8. Did you get an H1N1 in 1976? Yes
Please number your answers 1-7
Please write any explanation at the very bottom.
You can post your answers and/or email them to [email]ddlapan@yahoo.com[/email][/QUOTE]

My answers are “no” for all questions 1-8.

The cause of my CIDP was that I caught a virus that lingered.

Gary

Answers for questions 1 – 8 is NO.

The suspected cause for GBS is lingering virus and having open heart surgery with the lingering virus.
Got GBS 8 days after surgery but had symptoms (low back pain, feet and hands going to sleep, knees buckling)
before surgery with the lingering virus.

Shirley

I will respond for my husband who has CIDP-MADSAM.
1.Yes, hubby was diagnosed with sleep apnea for about 4 yrs. before his CIDP diagnosis in 2007.
2. Yes, has used CPAP since 2002.
3. Yes, diagnosed with Diverticulitis in about 2005.
4. Received many vaccinations for international travel as he was an airline pilot. We kept no records of time frame with vaccinations and CIDP symptoms.
5. Hubby served in the Canadian military, but no war experience but flew supplies into many different African countries.
6. I have MS which is also autoimmune.
7. Hubby is a nail biter ++
8. Never has received any flu vaccine.

Hubby had a bad bout of kidney stones in 2005 and had stents put in and wound up with a massive infection in his arm that went systemic and was on IV antibiotics. CIDP symptoms started after that with loss of use of rt. hand developing slowly and then atrophy of rt. hand and forearm over the next 2 yrs. and then foot drop. He as initially diagnosed with nerve impingments and had carpal tunnel diagnosed. Got worse after surgery, and was referred to a neuromuscular disorder clinic and was diagnosed with CIDP. Maintains marginally on IVIG every 3 weeks, but likely will need an add on drug soon as he is slowly deteriorating again.
Laurel

I just wanted to add that CPAP users are at greater risk for bacterial infections to the lungs due to the bacteria that can thrive in the hoses and humifier chamber. So I would wonder about that being a precipitant for CIDP. Who knows for sure??
Laurel

[QUOTE=jeanbell1]I actually have the following questions: for GBS or CIDP?

1. Were you diagnosed with sleep apnea before your diagnosis? NO
2. Did you require a use of a c-pap machine? For how long? NO
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? NO
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? Not that i remember
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? NO
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? Yes…great grandma with R A, a cousin with MS, an aunt with lupus and my brother has chrones disease
7. Are you a nail biter? When i was a kid i was
8. Did you get an H1N1 in 1976? I was born in 1976….so i don’t know
Please number your answers 1-7
Please write any explanation at the very bottom.
You can post your answers and/or email them to [email]ddlapan@yahoo.com[/email][/QUOTE]
It said my message was too short to print

NO to # 1, 2, 3 and # 5-8

YES to #4 Early symptoms started 4 months after flu shot. Following year after another flu shot (not diagnosed yet) was in a wheelchair one week later.

I will answer for my daughter who has cidp and is 4 years old. The answer is no to all eight for her. Regarding #4, my daughters cidp was caused by a virus called Parvo B19 or Fifths disease. Thanks for your inquiry.

1. Were you diagnosed with sleep apnea before your diagnosis? YES
2. Did you require a use of a c-pap machine? For how long? YES 6 Months Wasn’t sustainable for me
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? NO
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? YES Military Anthrax Shots but not tied to my onset that I can see. It was several years before.
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? YES but only by air. Not Gulf War.
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? YES Wife MS
7. Are you a nail biter? NO
8. Did you get an H1N1 in 1976? Probably

[QUOTE=jeanbell1]1. Were you diagnosed with sleep Pena before your diagnosis?[B] Yes[/B]
2.Did you require a use of a c-pap machine? For how long? [B]Yes, since 1998[/B]
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? [B]Yes to the gas – No to the infections[/B]
4. Did you receive a vaccination of any kind prior to symptoms? If yes, How long before onset of symptoms? [B]During 25 years in the military I was vaccinated ever time I turned around[/B]
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? [B]Yes, I am a veteran of Vietnam and Desert Storm[/B]
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? [B]No[/B]
7. Are you a nail biter? [B]Yes[/B]
8. Did you get an HAN in 1976? [B]Most probably yes, I was in the military at the time so…[/B][/QUOTE]

Sorry this took so long. For some reason, I didn’t see the original post.

Jim:

I searched this and found one of your posts from a couple years ago where you mentioned you had received the anthrax vaccination. I had the series of them and always have wondered what long term damage they might cause. I remember a fair amount of folks who refused to take them for this fear.

Probably never know the answer though.

Best,

Ron

GBS…

1. Were you diagnosed with sleep apnea before your diagnosis? [B]No[/B]
2. Did you require a use of a c-pap machine? For how long? [B]No[/B]
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? [B]With the exception of what I assumed was a 24/48 hr. stomach virus, no.[/B]
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? [B]No[/B]
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? [B]No[/B]
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? [B]Not that I’m aware of. However, with the exception of a couple siblings, I’m not really in contact with my family.[/B]
7. Are you a nail biter? [B]No[/B]
8. Did you get an H1N1 in 1976? [B]Not that I’m aware of, however, I was 11 years old in 1976. [B]Who knows what type of vaccinations we got back then? 😉 [/B][/B]

I thought my symptoms were caused by stress; so did my PCP who I saw two days before I could no longer walk.

Hope this helps!!

Hi Jeanbell,
Are you doing anything specific with your survey info.?
Laurel

My sleep apnea probably began around 1986 or 1987. I was diagnosed with a peripheral neuropathy in 1989, in 1999 the neuropathy was finally diagnosed as CIDP after several other mis-diagnoses.

I went for a sleep study in 1995 or 1996 and was immediately put on a CPAP.

I would answer no to all your other questions.

Remember that there is OSA (Obstructive Sleep Apnea) and CSA (Central Sleep Apnea) Most people suffer from OSA, which involves fatty tissues assisting with the blocking of the airway. OSA would not have a CIDP connection at all. I don’t know if there would be a connection with CSA and CIDP or not. CIDP usually is an affliction of the peripheral nervous system and breathing is part of the autonomic nervous system. Not to say that there could not be a variant of CIDP that functions in this manner, but not usually.

I grilled my neuro about a possible connection between sleep apnea, tinnitus, and CIDP. He told me that they were all separate and not to clump them together. He is well respected at a research University.

That doesn’t mean he is right, I have always found that when my tinnitus is louder, my CIDP will become worse in the next few days (almost always). The sleep apnea is constant, and I presume forever. But I am careful not to “clump together” too many things.
I think we did a thread about “clumping symptoms” a long time ago.

Dick S

No to all questions 1-8—–I think looking for similarities with this disease is a great idea–but will probably be very difficult. : ( Lori

[FONT=”Microsoft Sans Serif”]all “no” ;-)[/FONT]

My answers to questions 1 – 8 are all negative.

I have posted the answers after each question below.

1. Were you diagnosed with sleep apnea before your diagnosis? No
2. Did you require a use of a c-pap machine? For how long? No
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? No
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? No
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? No
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? Father had RA, Aunt had Lupus
7. Are you a nail biter? No
8. Did you get an H1N1 in 1976? Yes, I got swine flu immunization at a mass clinic in a local mall.

Please post the results of your study.

“No” to all questions. Although, I had a colonoscopy in April and started to have symptoms of CIDP in Mid July of 2009. I went to a neurologist who also ordered an MRI of my cervical spine because my neck and back hurt; in addition my right fingers felt numb and I did not have strength to stand up after I stooped down. It turns out I had a herniated disc C 5-6. I had surgery for this and thought this would solve my problem. But after surgery, my symptoms were worse–could not walk upstairs, could hardly walk, could not open a bottle of water, etc. So, my neurosurgeon sent me to another neurologist. This is when I got diagnosed in Oct. 2009.
I’ve only had 3 flu shots in my lifetime. I was never sick prior to my diagnosis. I never drank, smoked, and did drugs. I always exercised.

I had a stomach virus for 2 weeks about 5 months prior to onset. Received the seasonal flu vaccine in 9/2010 and the H1N1 vaccine on 11/15/2010. Symtoms started 4 days after H1N1 vaccine. No to all of the other questions.

no to all but 5. combat in Korea

1. Were you diagnosed with sleep apnea before your diagnosis? No
2. Did you require a use of a c-pap machine? For how long? No
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? Yes – my wife has complained about smelly night-time flatulence.
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? Yes, had conventional flu vaccine about a week before onset of symptoms.
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? No
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? No
7. Are you a nail biter? No
8. Did you get an H1N1 in 1976? No

1. tested, neg.
2. no c-pap required
3. IBS dx in 1979, diviticulitis in 1980, non malignant polyps in 1995
4. don’t remember
5. not me, hubby was medic in vietnam, yes, he was exposed to agent orange-he was in the field for 13 months with the 9th infantry.
6. my mother had severe RA.
7. most likely no

good luck
ms. judy

No to all except #6. I have a brother that was dignosed with GBS about 2 years ago, he was paralyzed, has made little improvement.

In 2004 I had major trouble with my lower back, had problems going up and down steps, had back surgery 01-05, when I recuperated from surgery was not much better, the tingling in my feet began, drop foot and then balance problems. The surgeon put screws in my back too close to a nerve. He did not tell me, I found out when I requested a copy of the report several months later. After many doctors I was diagnosed with CIDP in 11-09.