Another New member from DFW Texas
AnonymousJune 5, 2011 at 5:04 pm
Ive been diagnosed with CIDP about a week ago (5 months of symptions).
Most pain is in right hand, pinky, ring finger and palm very swollen (onion bulb maybe, very swollen sore)apparently the ulnar nerve. As recently left leg tingles and is becoming numb weak in knee and ankle joints some. left hand okay, right leg is trying to start tingling, I will also say at times my forearms burn. From spinal tap, CSL is normal, however after more blood test the only thing that came back abnormal was the ASAILO GM1 IGM antibody is high 57. I think I have decent dr. here in DFW, had first round of IVIG last weekend (I cant tell a difference ) I return to dr in a week, but wonder if anyone can advise if its a variant of CIDP. Ive been reading online from the Wasthington St Louis Univ.
I also plan on visiting the center in Houston as soon as I can get an appt.
Any idea what type I have…thanks in advance for anything!
And have a great rest of what left of the weekend!
PS typing is now a challenge….advice there, dragon dictation?
June 5, 2011 at 10:26 pm
Welcome to the family Blake, sorry that you have CIDP though. What center in Houston are you visiting? Baylor College of Medicine has some knowledgeable docs (testimonial); if you don’t find a neurologist that you trust and think is an advocate for you, let me know and I’ll recommend one. Read about others experiences with IVIG on this site. From what I’ve read its not atypical to not feel different after the 1st infusion. I’m treated with Plasma Pheresis so I can’t advise you.
Variations in symptoms of CIDP seems to be the norm. My neuropathy was bi-lateral and peripheral, but I also have some central nervous system involvement as well.
Please keep us posted on your progress and ask many questions. The best way to deal with our disease is together.
AnonymousJune 6, 2011 at 1:57 pm
Hello Blake, Yes, welcome
Note: MMN = multifocal motor neuropathy.
You don’t mention the results of EMG/NCV (Electromyography/Nerve Conduction Velocity) testing. If you have those results, please share.
If not, it raises the question- How was diagnosis made? Here is an excerpt from a GBS-CIDP newsletter:
David S. Saperstein, M.D.,
Phoenix Neurological Associates, Phoenix, Arizona
“[I]…When evaluating a patient for possible CIDP, the two most important tools are the information obtained by (1) speaking with and examining the patient and (2) studying nerves with a test called an electromyogram (or EMG)…[/I]”
Unfortunately, neither the article nor the link contains a date that I could find. It is not important. I reckon the data, as stated, would be relatively unchanged if it were authored today.
Regarding the Ganglioside (asialo-GM1) Antibody, IgG/IgM, you say you have been reading the Washington University St. Louis link I sent to you. Here are some reference ranges from The University of Iowa (UIHC), Department of Pathology, LABORATORY SERVICES HANDBOOK Dated 11/10/2010:
Ganglioside (asialo-GM1) Antibody, IgG/IgM
29 IV or less: Negative
30-50 IV: Equivocal
51-100 IV: Positive
101 IV or greater: Strong Positive
If you compare that to the WU literature at
which states, in part: “…Interpretation
Dx of immune neuropathy
[COLOR=”Red”]Distinguish MMN vs CIDP[/COLOR] & ALS
Prognosis: Not ALS;
Cytoxan or HIG often useful
Prednisone not useful
Follow-up: Cytoxan Rx
* anti-GM1 titer ® ? relapse …[/I]”
However, according to the NIH (All NINDS-prepared information is in the public domain and may be freely copied.)
“[I]…Is there any treatment?
Treatment for multifocal motor neuropathy varies. Some individuals experience only mild, modest symptoms and require no treatment. For others, treatment generally consists of intravenous immunoglobulin (IVIg) or immunosuppressive therapy with cyclophosphamide.
What is the prognosis?
Improvement in muscle strength usually begins within 3 to 6 weeks after treatment is started. Most patients who receive treatment early experience little, if any, disability. However, there is evidence of slow progression over many years… [/I]”
Please note that Prednisone (or any steroid, in my opinion) is not an option for treatment of MMN. You state you’ve had one dose of IVIG. Refer to what the NIH says- improvement usually begins in 3 to 6 weeks. Be patient. On the other hand, you must make sure you get enough IVIG often enough. Work closely with your doctor by keeping a log of your condition. Report declines immediately.
Let us know how it goes after you’ve been to a center of excellence.
By the way- did your doctor express concern about a level of 75 on the IgM? It could be that level is considered unremarkable.
Afterall, I am not a doctor.
AnonymousJune 6, 2011 at 2:20 pm
Thank you for the replies. On May 13, I went in for the EMG results. The Neuro basically said I had sensory nerve issues and called it CIPD. SHe wrote down the acroymn on a post it and handed to me, then reviewed blood work i recently received, all in normal range, except D very low. Said to start taking D, Calcium, B (thaimen) and wrote prescript for 5 sessions of IVIG which occured over holiday weekend and ask for one more round of blood work which as the ganglioside IGG and IGM, (inc Asailo) test which I got the results from primary care phys.
I do not have results of EMG as of yet, will ask for them at my next appt on June 13 – as I would like to visit the center of excellence in Houston in the next month and share the results.
I have read about MMN, infact the blood work test says that might be it, but of course do not count on only one test to determine in the foot notes.
I can walk okay now, but my left hip is achy, right knee and right ankle…seems to be progressing slowing
Thanks a million for the info. I start PT/OT for the hand today too.
Sorry for any typing errors as right hand not fully functional 🙂
AnonymousJune 6, 2011 at 3:56 pm
Great news that are you trying to go, or will go to a Center of Excellence.
Also, in my opinion, great news that you got dyslexic (a joke, OK?) and turn 57 into 75. Personally, I would probably disregard a reading of 57 were it my own reading.
Reason? Well, it’s borderline, but more importantly, I read some other opinions (some doctors) that immune mediated conditions might cause this to change rather than the change cause the condition.
As for your Question about Dragon Naturally speaking- I do know that others have said they use it. I was given the software package as a gift. The box listed the requirements as a certain CPU (Central Processing Unit) speed. My PC said it met this requirement.
That’s the easy part, every PC lists that. Here’s the tough part and the reason the software would not work on my machine, and which, by the way, I could not find out until after I opened the box and installed the package. Big deal? Yes. After you open the box you are not allowed to return it….
The kicker is “(IMPORTANT: SSE2 instruction set required)”
Good luck finding that anywhere on your PC!! How can you find it out? Simple. Call Dragon and ask them how to find it before you buy the software.
Personally I’d rather hunt and peck with my fingers. (Even with one finger) forever than stop using my fingers to substitute my voice. Use ’em or lose ’em.
Re: the PT. You live in or near a major metropolis. Try to find a P/T with a Neurologic Specialist Certification. Why? According to the American Physical Therapy Association, A Neurologic Certified Specialist (NCS) is a licensed physical therapist who has:
1) completed over 2000 hours of neurologic clinical practice while working with individuals who have neurologic dysfunction.
2) demonstrated competency in the following areas: Patient Care (examination, evaluation, diagnosis, prognosis, intervention), Patient Education, Interpretation of Research, Administration, Consultation.
3) passed the Neurologic Certified Specialist Examination.
4) obtained certification Neurologic Physical Therapy by the American Board of Physical Therapy Specialties (ABPTS).
Search for one in your area here:
AnonymousJune 11, 2011 at 11:11 am
I have been receiving IVIG for three years now.
My doctor is Alan Martin at Texas Neurology. I highly recommend Dr. Martin. He was my second Neurologist, the first did not have a clue.
Dr. Martin also goes to Presbyterian Hospital on Walnut Hill. It use to be on Tuesdays.
I am very functional, but there are activities I had enjoyed that are too difficult due to muscle weakness and muscle fatigue, i.e, golf.
If you have any questions regarding my experience with CIDP, please let me know.
AnonymousJuly 10, 2011 at 4:29 pm
Hello – I thought I would share my progress, as I understand it.
On June 14, I started weekly IVIG’s (for 6 weeks) and daily doses of 60mg predisone(30 days). I am on day 29, however I went to Doctor for follow-up late last week.
As mentioned earlier in this post, the only blood work that was abnormal was my ASIALO GM1 IGM, it was in the high range(50’s). It was taken before the hi-dose 5 day IVIG treatment that took place over the Memorial Day weekend.
New blood work came in last week, and since treatments started on June 13, the ASAILO GM1 IGM has almost doubled (90s) and now the GM1 IGM has now moved into the high range (went from normal to 60’s). By the way, the antibody blood work is in the group GAINGLIOSIDE GM1 AB-which I wish I knew more about those antibodies. My GM1 IGG and MAG IgM are currently in normal range.
So…here are the next steps per my Neuro, 60 more days of 60mg predisone now added, along with 500mg methylpredisone (IV) weekly and 8 more weeks of IVIG. I told her about concerns of the side effects of predisone and she commented that is the least of our worries you have a bigger issue at hand.
My doctor appeared pretty baffled, esp since the GM1 IGM now is high. She said I am either a non-responder, or very very slow. She mentioned that she just got back from a conference(don’t know what conference) and that Europe was more advanced in studies with this disease and was going to reach out to a peer of hers and explain my situation-to see if we need to change current path of prescribes. She also noted that I must have a very very variant to the CIDP disorder as that my pain is asymmetrical, and primarily sensory….I will note pain has increased and leg buzzes a lot more these days. Knee is weakening, but I can still walk okay.
It is also worth noting that if the predisone/IVIG treatment does not work, my Dr. said next steps may be the rituximab path. It will be interesting to learn if her colleague in Europe has any other advice. I have not ruled out a trip to Detroit to visit Dr. Lewis at Wayne State. I hope someone finds this useful and I hope everybody is doing well!—Cheers!
AnonymousJuly 11, 2011 at 2:00 pm
Thank you for calling out my typo, should have said CSF, NOT CSL, and all of those readings came back normal. The spinal tap test, again CSF (Spinal Fluid) was run in March.
As for the MMN, when I read the blood test results, foot note says IGM is often associated with Multifocal Motor Neuropathy, (although do not rely on this test alone). I didn’t know what I had as this was early on…. Neuro confirmed CIDP after the EMG results (test in May), which I have not seen those results. Side note….If you ask for your patient records, are Doctors obliged to give them to patients?
AnonymousSeptember 22, 2011 at 6:38 pm
Thought I would provide an update….To answer the question above re: CSL, the spinal tap (March 22-11) showed within normal range for both the CSL Glucose and CSL protein. Another question ask was about the nerve conduction studies (I have results). I don’t quite understand everything, but both studies conclude: “Abnormal Study” and some key words from the study include: prolonged DML’s, CMAP had slow CV’s, ulnar SNAP not recordable, and the last sentence of the report study said “ Most SNAPs tested had low amplitudes, prolonged PLs and slow CV or a combination of the same.”
As for current prescriptions: I had IVIGs from May to the end of July-stopped, bc didn’t they were working. Started 60mg prednisone in June and 500mg of solumedrol IV in July. Currently week by week reducing both steroids. Should be off by mid October. Also taking Vit B’s & D, Calcium, blood pressure, amitriptyline. I only gained 12 pounds, but can’t shed any!
Lab reports from Clinical labs continue to show elevated Asailo GM1 IGM went to 93, then two weeks later (July) dropped to 76. Also the GM1 IGM moved up to 66 then two weeks later was at 53. The Dr. said the IVIG could affect those numbers, but it was concluded that the prednisone was helping suppress.
I finally made it to the Center of Excellence in Houston at the end of August. They were not sold that I had CIDP. They recommended that I taper off steroids and see what happens. My symptoms remain the same just a bit more intense, right hand extreme pain pinky, ring finger and palm. Pinky is clawing. Let foot tingles, burns, buzzes (worse now than in June). Both forearms and shins often burn, esp. when sleeping. Occasionally get aches in the knees and ankles, but come as quick as they go.
The Houston COE did lots of lab test and sent stuff to Athena labs and I received a call from the Dr. this week. He says blood work shows Monoclonal Gammopathy (IGM Lamdba ISO Type) or MGUS. He said to keep coming off steroids and then if pain progresses, we may need to do a nerve biopsy. Also recommended I see a Hematologist. Their office is mailing me all the lab findings this week.
During the summer, I also saw an rheumatoid arthritis doctor (and other dx), and was tested for diabetes, glucose intolerance, RA and sjogren’s syndrome-all negative (one test was borderline). During these test, it was also discovered that I have dynamic subluxation of the right ulnar nerve and recommend transposition surgery (funny the first symptom started 24 hours after bowling on Jan 27-2011 with the buzzing of my right pinky). The Houston COE said there is a good chance that the surgery will NOT help, so be prepared-but recommends if pain affects quality of life (which hand pain soars after an hour of computer use). My prime Neuro in Richardson, TX wants more information about the surgery and she has to sign off before the Worrell Clinic proceeds. I do want to add that my Dr. in Dallas has been very open to speaking with other doctors including the Houston COE.
Again I hope someone finds this of use and thanks for everybody else for all the various post….My thoughts are with yall!
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