Hi everyone! I’m new with questions :)
AnonymousOctober 11, 2010 at 8:13 pm
I want to extend my compassion to all of you suffering from this and other related conditions. I came onboard for some help and clarification. Expecting it from the md’s is sometimes a tall order. And I’ve learned that pts have more answers than most. I am not expecting a dx, just some help sorting thru this!!!
So maybe you guys can guide me a little. I am a 41yr gal in NYC. I have a major sleep disorder, hyperadrenergic orthostatic tachycardia syndrome, seizures, fatigue, spinal stenosis, chronic pain, gastro, small fiber neuro, and you know the rest…. these things have been going on as long as I can remember.
My question is about cidp and getting a dx. Can you guys translate these emg readings?
Sorry if this will be long, I just have no idea who to see, or what type of specialist. My current neuro knows nothing of autonomic disorders, or why I have had the seizures, and I am trying to narrow down the field. My cardio is great, but again, I need to connect the dots. All this could be autonomic dystfunction and not cidp at all. But maybe you can help clarify 😉
Ok, here goes…What’s up with the F wave? Or lack thereof? My neuro in ’06 thought I had cidp based on her emg and progression of damage from 2002. Her summary: “abnormal studies upper/lower extremeties. neurophysiologic evidence for moderate sensory mototr demyelinating peripheral polyneuropathy.” I won’t elaborate on findings, but briefly left peroneal F wave abnormal NR. Right peroneal F abnormal NR. Left tib F prolonged latency, right tib F prolonged lat. Remaining F waves normal.
So, she sent me to Mayo Minn. for the POTS and possible cidp. Their emg was much quicker than hers, and we mostly concentrated on the POTS. Their findings re: nerve damage: “mild length dependent axonal neuropathy, normal conductions, some evidence of distal denervation. sweat test 2% anhidrosis w/ distal distribution. Summary: the peroneal F wave was not obtainable which can be normal however given her anxiety (lol) and substantial compound muscle action potential amplitutde, it is somewhat surprising that the F wave was not elicited. Needle exam revealed large motor unit potentials in distal leg muscles with fibrillation potentials in the foot. Evidence of length dependent axon. neuro with No evidence of sensory motor involvement suggesting small fiber component.”
And lastly, this year, the new neuro who i saw for the seizures, did another emg and also mentioned likely small fiber neuro. He said: “No evidence of polyneuropathy, No evidence of lumbosacral radiculopathy.” From the study/chart itself, I will just read what I see about the F waves. sensory study, saphenous nerve, ankle, left and right side absent. Superperoneal nerve, left and right side absent. F wave study: peroneal EDB ankle, F wave absent bilaterally.
Now that I’ve made you all dizzy reading this, can anyone tell me what that means? Or why my first neuro thought it was cidp, and why the others did not? What is a small fiber neuropathy? I have blood pooling in the legs due to pots, pain, tingling, buzzing from knees down. Have trouble climbing stairs, walking too long etc. But I also found out i have early onset emphysema.
I am really sorry but no one has ever explained any of this to me. Is it something I pursue, or just find a new neuro for the autonimic issues?
Thanks a million and sooooooo sorry for the length of this!!!!!
Happy Monday everyone!
AnonymousOctober 17, 2010 at 8:23 pm
Sorry I cannot explain the EMG terminology. One day my doctor was trying to explain the waves as she was doing the test and I couldn’t follow. I was dx w/CIDP after an initial dx of Guillain Barre since Dec. 09.
I live on LI and see a Neurologist, Dr. Sue DeLanerolle. She dx and got me on IVIG treatment immediately.
She also had me go to a second opinion in NYC. I saw a Dr. Matowalla (?spelling) in Columbia. He was very good. My dr. felt that they see more cases and may have additional information. If you aren’t too far from Columbia, maybe you should give him a try.
I was very impressed with him.
I keep copies of all my records and wrote a diary from the first symptom to the present. He had me fax it to him along with my neurologist notes, and test results. When I got there he had all the notes in different packets and had read everything. He highlighted different things. He listen and was able to give me an exam and agreed w/my dr. I was probably in his office for at least an hour plus the time he took to read all the information before I even got there. He gave me guidance as to what I needed to follow up with and wrote a complete report and sent it to my dr.
I hope this can help you. Good luck.
AnonymousOctober 18, 2010 at 12:16 am
You definitely need a neurologist to interpret those findings for you. Specifically one that is certified (or at least very experienced) in EMG/NCV (neuromuscular) testing (some neuros don’t do this).
I would start with the recommendations above if you don’t have a Dr that fits this description.
You might also want to check with the Foundation and see if you are near any Centers of Excellence, or who they would recommend in your area.
Best of luck to you in getting a full diagnosis!!
AnonymousOctober 19, 2010 at 1:46 pm
Hi guys! Thanks so much for letting me know. I will look into finding the doc at Columbia and also look for centers of excellence. I am kind of throwing out the Mayo Clinics impression since I was not too enthused about the care there, or the studies they did regarding the nerve damage. Either way, thank you for posting. I didn’t want to bug you guys especially if I’m in the wrong place, but you know patients really have a wealth of information. I was hoping it would be something obvious! lol.
Or easy to pin down due to lack of F wave… but I know nothing!
Thanks so much, and I will look up that doc :))) If I can’t find him I may check in again to verify the hospital.
Thanks again 🙂
AnonymousOctober 19, 2010 at 2:29 pm
I looked the doctor up. I had spelled his name wrong. I thought he was very good. I friend came with me to the appointment and she had the same impression. Good Luck.
Rajeev Motiwala, MD, Neurology (Board Certified)
710 West 168th Street
New York, NY 10032
Phone: (212) 305-6876
October 19, 2010 at 3:52 pm
Just read your thread. My husband was also seen by Dr. Motiwala at Columbia Neurological Centre when we could not get a neurologist in Canada to take him seriously.
Dr. Motiwala is top notch! In 3 days he diagnosed my husband with post – viral small fibre neuropathy and prescribed a loading dose of IVIG (4 days 2grams/kg)
Unfortunately once back in Canda it has been 6 months and he has received no further treatment- they are still doing tests!!
By all means try to get to see Dr. Motiwala.
Kathy from Canada
AnonymousOctober 19, 2010 at 4:25 pm
Thanks so much for the good review as well. I am so sorry about your husbands struggle to get the care he needs. Can you guys come back to NY for another treatment? Why can’t anyone help him where you live?? Couldn’t Dr. Motiwala write a scrip for you to use there?
I may be moving to Greece, and I am panicking about the healthcare. I want to try to get it all in here before I leave. But I don’t know hom much I can fit in.
I hope your husband is coping and still seeking out the help he needs. There must be someone! It is awful to hear that you are not taken seriously. Please don’t give up…. maybe in another nearby city?
Wishing you and your family the best… and thanks 🙂
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