November 21, 2006 at 10:54 am #4030
It was good to get a massage from Natesmom, living in El Cajon !
Since we all probably go through the same kinda “Santa Ana/ut-oh keep away from the heat” problems, it would be nice to meet others in the area.
I live in Oceanside.
Maybe we could even get together before I’m dead n’ gone…lol.
Give a shout !
KedasoNovember 23, 2006 at 11:22 pm #29018
I would love to get together with some of you SD County folks. Nate really needs to be around more of you so that he can learn from you more of what you and him are experiencing.
I keep telling him to go on this site but after he looked for a short while, he felt that it was depressing to read about how bad it can get and how long it takes to get better.
I tell him things that some of you say about the same things he has happening, and it seems to help some but I think in person would be better.
Oside is only a 35 to 40 min drive from here.
After we find out if there are more close by, we can figure out where in the middle we can all meet.
Gene is also in La Mesa, right next to El Cajon.January 8, 2007 at 12:16 pm #32499
I live in Orange County with my husband and daughters. I am still awaiting confirmation that I may have CIDP. (It sure is pointing in that direction though). I had normal blood tests, slowing on my EMG, and a normal brain MRI. I see a “specialist” in February. They can’t get me in any sooner. I have experienced the pins and needles, muscle aches, muscle spasms and tremors of my fingers since last April. The weakness has progressed and was markedly noticable for the last 4 months but I am still walking. I can’t get up out of a chair without using my hands or climb our stairs (we have a two story house) without using my hands to “hoist” me up. I fatigue easily.
Have you found a decent neurologist? Are there specialists you know of in Orange County?
This is all new to me and I have searched the boards and internet for answers and advice, though this is the first reply I have made.
Would love to hear from you.
Still hanging in.
TarynJanuary 9, 2007 at 12:23 am #32564
This is all so fresh in my memory… hopefully you can find some help quickly… each day is so precious…
We wish you the very best… our thoughts and prayers are with you.
D and KJanuary 9, 2007 at 8:12 am #32579
I live in Oceanside, the border of both counties.
After going through hell for about 3 years, I got my final diagnosis of CIDP with a rare variant of Lewis-Sumner, that has now gone into my autnomic system, (small fiber atrophy=autonomic neuropathy). I know what you are going through.
I went through a few neurologists until I came across a very good group of neurologists. It is a team of doctors, with each doctor specializing in some type of neuro problem.
They have offices in San Diego county, (La Jolla, Encintas, and Oceanside).
They are called, “The Neurology Center”, and my doctor is Dr. Gregory Sahagian, who specializes in neuromuscular diseases. He is also chief of Neurology at Tri-City Medical Center in Oceanisde. He is a cool doctor, and has a great assistant, Karen. I like working with them very much. They also have a website:
I hope this helps–keep in touch and let me know how you’re doing.
If you do go with Dr. Sahagian, tell him “Ken Soden sent you to the neurology gods at the Neurology Center”…
Be sure to definitely make the appointment with Dr. Sahagian, since he the the one on that team of about 10 doctors that works with CIDP patients.
…KedasoJanuary 9, 2007 at 2:57 pm #32610
D and K and Kedaso:
Thank you for your follow up. I am “forced” into taking things from day to day and I seem to have more weakness than anything else. I am trying to stick with a “specialist” of neuromuscular diseases in Orange County but I certainly will keep your group in mind from Tri-City. I am very familiar with that area as I have relatives there.
I am new at navigating this site but saw your older posts.
Are you still on IVIG or the plasmapharesis? I am leary of what the steroids can do to a person.
I’ll keep in touch and let you know what’s going on.
TarynJanuary 9, 2007 at 5:44 pm #32627
I live in Orange County. There are a number of neurologists with pretty good reputations centered around Hoag Hospital in Newport Beach. Dr. Verghese in Newport Beach treats numerous patients with neuromuscular diseases like CIDP, he has lots of experience utilizing IVIG. Additionally, if you are confirmed as having CIDP and you are prescribed IVIG, the Hoag Hospital outpatient clinic in the Cancer Center is an excellent facility.
Dr. Mozaffar at UCI is probably the top-level specialist in Orange County, he would be good for getting a diagnosis if you can get a referral to him. I also saw Dr. Graves at UCLA a few years ago and he is excellent, but quite a drive obviously. Additionally, my doctor sent me to see Dr. Bosch at Mayo Clinic Scottsdale for another set of expert eyes after I was having a really rough go several months back.February 10, 2007 at 1:11 am #35085
I’m nearby in Carlsbad. Actually lived in Oceanside for 14 years. I bet we know many same drs. I see Dr. Sheean at UCSD. I’d like to know a little more about your history with CIDP. I just posted my story yesterday .February 14, 2007 at 8:10 pm #35452
I was able to go to UCI and see Dr. Taseen Mozaffar, the Director of the ALS and Neuomuscular disorders. I feel very blessed for that. I had all the tests of emg, ncv,lumbar puncture and blood tests for minerals and heavy metals. The lp had elevated protein levels which helped to confirm CIDP. I had my second IVig yesterday and was once again wiped out. The IV’s are administered at the patient’s home once insurance is approved. We had to speed up that approval process a little bit as well thanks to my negotiating husband.;)
I am getting Gamunex and the 2nd time the R.N. questioned the use of Sodium Chloride with it for hydration as the literature says it is not recommended due to a “binding factor” (whatever that means) and treatment may not be as effective (I also don’t know if the first treatment therefore was less effective).
1.Has anyone heard of this Ganunex should not be infused with Sodium Chloride but Dextros?
The next treatment next week the pharmacy will be sending Dextrose with the Gamunex.
Also, I had the side-effects of chills, headache after the 3 hours of infusion and a terrible back ache. The first time and the same after 4 hours infusion rate the 2nd time.The nurse said it could be infusion rate or toleration of the brand suggesting Gammaguard for the other option.
2. How does one decide (with the physician of course) to switch brands? Does one develop a tolerance after more infusions? I’ve also put my questions into my drs. e-mail.
I am scheduled 2 x’s a week for six weeks and 1 time a week for six weeks thereafter.
Thanks for your thoughts,
TarynFebruary 14, 2007 at 9:15 pm #35457
Nate was in St Joseph Hospital in the city of Orange when he was diagnosed with GBS. His Neurologist was Brian Boyd in Orange. He was good but very arrogant.
Nate was in St Joseph for a month, then transferred to Fountain Care on La Veta.
He got good care there but he needed to be closer to El Cajon. Orange is 100 miles away and it was very hard having him so far away.
Once he could stand, they let him go home. We were so glad.
I can’t find any Neurologists here that takes Medi Cal so I will have to go to UCSD to find one. Thats ok, its not too far.
If you have access to choose your own doctor, and you live near there, you might look Dr Boyd up.February 14, 2007 at 10:54 pm #35464
I have been getting Gamunex for 10 months at the UCSD infusion center (they do alot of IVIG) and have always received saline with it, never dextrose. I got gammaguard my first time and found it less tolerable. The consensus here is that Gamunex is the best in terms of side effect. I have also had the backaches, but I think it is in part due to the sitting in one position for an extended period of time. I also get pre-medicated with tylenol, benadryl and solumedrol. I found that the headaches go away as you grow accustomed to the IVIG.
The IVIG is only slowing my progression, so I am now on rituxan. Good luck and hang in there. I know how though it is, for a year I was told I had ALS.
GrantFebruary 15, 2007 at 11:16 am #35487
Thanks for that. I heard back from my neurologist and he was adamant that its o.k. to use saline with the Gamunex. He also said in no way should it affect the efficacy of the treatment. Again slowing down the infusion time should help and I need a nurse that isn’t in a hurry. I do premedicate with tylenol and benedryl. I also thought about the not moving part during the infusion but my back hurt for days after too.
I am a patient person so if I need to get used to the IVig and its effects, then that’s what I’ll do.
Next infusion is next Tuesday. I’m setting my mind on it improving each time!
Sorry for you for your misdiagnosis, its all in the letters isn’t it.;)
Good luck to you too,
TarynFebruary 21, 2007 at 10:28 pm #36097
ask for the infusion rate not to exceed 100 ml/hr. take care. be well.
gene gbs 8-99
in numbers there is strengthFebruary 24, 2007 at 7:03 pm #36345
Yeah, the first IV rate was up to 120. That was a mistake…
I am currently getting an infusion rate of what I think is 60 or 70 but I’ve had migraines each time so they will probably slow it down to 50 per the pharmacist’s suggestion. Yes, the nurse was here for 5 hours with 30 minutes lead time to start my line.These last infusions were brutal as my arms still aren’t used to pokin’ and all that liquid but it’s only been the 4th IV.
I’ve had a much better day afterward and I’m still seeing progress. I got up out of a chair without my arms to push up!:D I am extremely hopeful and I’m still kind of green regarding the whole process but I will persevere.
Thanks again for your comments I have great support here at home but it’s still good to hear from someone who’s been there and done that.
TarynFebruary 28, 2007 at 9:20 pm #36704
I live in the University City area. Would enjoy getting together with others in the SD/SoCal area. I’ve been a member of the board for awhile but I guess was deleted when the site went down. It is great to have it back! I also have Dr. Sheehan for my neuro. He is trying to get Rituxan as we speak(so to speak) and am hoping for a positive outcome.
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