what meds are you digging?

Can you elaborate on what symptoms/problems that you are having that need treatment, and then we might be able to jump in with some ideas. Your heading follows me listening to Carole King and James Taylor last night so it too brings back thoughts of my youth.
Laurel

Hi NorthernGG,
I have MS and hubby has CIDP. Your symptoms sound closer to MS than CIDP i.e. the balance issues and girdle tightness. Have you been diagnosed by a neurologist?
Laurel

Good luck with your specialist visit. I don’t know anything about Miller-Fisher. My husband has CIDP–MADSAM and has IVIG treatments every three weeks. He has no balance issues–he has atrophy of the rt. hand and foot drop of the right foot. It took him about 3 years to get a diagnosis. He had to leave a general neurologist and go to a neuromuscular disorder clinic to get a proper diagnosis. So much time had passed without treatment that he was left with permanent damage. So early proper diagnosis is critical for you. Don’t hesitate to get second opinions. We wish we had as hubby just trusted the first neurologist thinking their skills were all the same. Not the case as doing EMG’s and nerve conduction studies need skilled operators as we learned. Have you had extentive testing? i.e. lumbar puncture, mri, EMG, Nerve conduction studies, bloodwork for autoimmune disorders, heavy metal testing, vitamin deficiencies, blood sugar levels, thyroid levels etc.
Laurel

Is it Dr. Vera Bril that you will be seeing? Are you now getting IVIG?
Laurel

[QUOTE=northernguitarguy]Hi Laurel

I have been diagnosed GBS by a neurologist. I was down within a week and a half. Do not think it is MS. A former patient says to look into Miller-Fisher cause I have double-vision as well. Hopefully seeing a GBS specialist in Toronto soon.[/QUOTE]

Consider yourself lucky on getting diagnosed so quickly! It took me almost 8 years and loking backwards, my neuro’s now think it was Miller-Fisher that went undiagnosed (first symptom was double vision) that eventually manifested into CIDP,+ other DX’s that suck! I still have the double vision(8 years later), I still can’t feel my fingers and feet and when I do feel them, it is to feel pain! I am really curious as to whether or not you still have double vision? How long ago was your first symptom and what was it?
As far as creams are concerned, I have tried many that range from $5-$120! Yes, I was so desperate I spent $120 on an ETA Force gel or something like that. I found one that does releive some of the pain. It is called Mobisyl-pain relieving creme. In the USA it cost $16.50 for 226.6 grams (8 oz). I highly recommend it! Good luck to you. I would love to hear your progress sinceI think that you and I started our illness with the root of Miller-Fisher.
I have recently stopped taking all the “traditional medications” prescribed to me by my dr’s because of the side effects. I have taken Neurontin, Cymbalta, Lyrica, Savella, you name it, I have it in my medicine cabinet! All I have to show for it is no relief and tons of side effects like weight gain (40 pounds in 3 months) which is not good for these nueropathic feet! I slept all of December, missing x-mas with my husband and children, I have lost my memory, and the list goes on and on…….
I am now searching a holistic route. I am trying to take anti inflammatory vitamins (a ton of them), I am also on an Amazonian Root therapy that has helped tremendously, I will start phy therapy soon alkong with acupuncture. I am hoping that all of this along with the IVIG treatments will have me live a semi normal life! Oh, I almost forgot, I am also getting nerve blockers in my spine (they inject steroids into my spine to control the swelling). I have also had a neuro stimulator surgically implanted in my spine(I don’t recommend this). It is suppose to control the pain, but I found out the hard way that it does not work:-(
I could go on and on….. Please let me know of your progress. Send me a private message if you want or post it here and send me a message that you responded please. As you can see, I am still working on getting my memory back:o
Thanks and all the best to you and your wife. You might want to talk to her about getting on this forum for caregivers. It is a lot of stress on our spouses to see the ones they love deteriorate and not know what is in store for the future. It took my husband years to get on the forum. he doesn’t post anything, he just reads. It let’s him know he is not alone and that is all he has needed to hear. That may change soon, and it is comforting to know he alkready has a place he can vent when he is ready and out of hius denia stage.