September 2, 2020 at 4:17 am #117707
Hi, I have always had numbness, tingling, burning and squirming feelings in my legs and feet since being diagnosed over 2 years with CIDP now it feels like my feet are broken and collapsing very painful to walk. I can’t get to my neurologist due to COVID restrictions here in Australia. Wondering if anyone has experienced this?
September 2, 2020 at 6:51 am #117708Ron BrunelleParticipant
At my lowest point dealing with CIDP my feet were completely paralyzed. I couldn’t move them, I couldn’t feel anything if you touched them and they couldn’t feel temperatures (hot or cold). After 3 years of Gamunex infusions and the more recent CET treatments (combination electoranalgesia therapy) is a neuropathy pain management program. I am at the point now where I’m starting to feel almost normal again. After being out of work for a year, I’m making arrangements to return to work. 👍
Keep up with your treatments and don’t loose faith. It takes a while but you will get better.
September 2, 2020 at 7:41 am #117709Walter KParticipant
I also live in Australia in the Northern Rivers and usually see specialists in Queensland on the Gold Coast. Since covid started I have only ever had tele-health consults with all doctors and specialists. It can be done by phone or Skype or any other means and is fully covered by Medicare.
I found that a lot of doctors actually prefer it these days since it means less traffic through their waiting rooms.
I had an extra long first time skype/video consult with an immunologist in Brisbane yesterday without problems and saved myself driving around for a full day. Prescriptions and referrals are sent by mail or email.
Also I am in email contact with the receptionist of my neurologist who passes on messages and books the doctors consults accordingly. I can really recommend it!
As for your pain:
I have also experienced same or similar symptoms for about two years and they have continuously spread out into other limbs and spine. While I was still able to exercise a year ago, walking is becoming increasingly more painful these days and when the progression is in full swing it feels like the legs are becoming too weak to walk. It feels like my nerves are exposed and very irritated.
I read a few times that every neuropathy is different, even though similar in nature.
For me the most obvious sign of active progression has always been a rise in temperature in my spine which I cool down with ice cold showers for 10-15 minutes or so even in winter ( I sometimes just let a cold stream of water run down my spine if the weather is too cold to have a complete cold shower).
Other than that I found high strength Curcumin (equiv. to dry rhiz 15.8gr, Curcuminoids 600mg with piper nigrum extract) to be effective. I took one in the morning and one in the evening but think the dose could be doubled since the effect is not very strong. you can get that from Chemist Warehouse (Healthy Care Brand or Bioglan) or Woolworths (Natures Own). Both these deal with the inflammation and have no side effects.
For the healing I found limited relief from protein supplements and amino acids as well as vitamin B12 and Thiamin, Fish oil and vitamin E and anything that reduces inflammation within the body including low carb diet.
Having said all of the above, these are all ways which have provided me limited relief, but are most likely no complete substitute for conventional therapy.
Since I started taking Prednisone I felt more relief in 10 hours that I have ever felt with alternative therapy.
I read in one of your posts that you mentioned you are allergic to Prednisone which is very tragic since it is so extremely effective. Perhaps you want to give it another try at some stage.
My Immunologist now wants to shift me from Prednisone to “Mycophenolate Mofetil” also an immune inhibitor, because most doctors are a bit worried about the side effects of Prednisone.
I so far had no side effects other than difficulty sleeping for the first 3 nights.
I found best results at 50mg/ day but am now on 20 after one month.
September 2, 2020 at 2:35 pm #117710
Hi Walter K, who is your neurologist and immunologist? My neurologist is Dr Richard Adams at Southport, I don’t see a immunologist.
I have had a phone consultation with my neurologist ever 6 months but i find face to face easier.
As for Prednisone it makes me very depressed suicidal on small doses.
Thanks for replying and the information.
September 2, 2020 at 2:37 pm #117711
Thanks Ron for the great words of encouragement.😀😀
September 3, 2020 at 7:11 am #117712Walter KParticipant
My current neurologist is Dr Arman Sabet in Southport. I now also had my first consult with Immunologist Dr Heyworth-Smith from Brisbane. I am located in Billinudgel 2483.
At the moment I believe they are both on the right track and doing the right thing/ initiating the right treatment and conducting the right tests.
I wish I had gotten the right treatment 2 years ago, I would be in much better shape today.
I have prior seen 4 other neurologists, 1 in Australia and 3 in Thailand in quite prestigious private hospitals. All of them prescribed vitamin B and either Lyrica, Gabapentin or some other stuff which does not treat the actual cause, even though they had all the info they needed to start a different treatment.
Many neuropathies are progressive and our clocks are ticking while something could be done to slow or stop the progress. Two years ago I did not have the understanding and have been relying on the wrong advice.
I have also been depressed at times during my illness and the desire to live on can be submerged in pain and misery but there is usually light at the end of that and the good times outweigh the bad times. I can still work full time, the days are better than some nights.
It sounds like you have also been going through some rough spots.
After all what is most important is that we beat the disease and not give in, that will provide room for mental and physical recovery.
Did you have any physical relief while on Prednisone? How much did you take and for how long?
Do you feel any relief from IVIG at all?
September 11, 2020 at 3:06 pm #117716
Sorry Walter K for slow reply, I am allergic to Penicillin which was how I found out that that I was also allergic to Prednisone. So I have not had any Prednisone. They say you should feel more better after ivig treatment but I haven’t experienced it in the way they say, After a period of 2 years there is some slight change.
I am though getting slow increase in drop foot more left side pain in feet and muscle weakness in lower leg.
It seems like I go in cycles of some wellness but relapse bring more long term issues.
I live in the 2480 area.
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