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Hi Ausvoltz
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?Hi Ausvoltz
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.Hi Teresa
You say you lost function of your arm a few days before treatment.
If this is correct then I believe it is unlikely that it was caused by IVIG.
I read comments from other people that their symptoms start to worsen a few days before the next IVIG treatment is due because the effect is slowly wearing off.
It would then be the standard procedure to reduce the time in between treatments.Please tell us more about why you started treatment only after 8 years.
It looks like your symptoms have worsened and you have then been prescribed IVIG?
What other events can you remember in the weeks or months before your symptoms worsened?
Any changes in your lifestyle, eating, exercise or other habits?
What other medications have you tried now and during the last 8 years?Thank you David!
It is very good to hear your story and it helps me understand the whole situation much better.
I have also read your story here:I learn the following:
You seem to have taken an active role in your treatment and not only relied on your doctor.
Ultimately this lead to your recovery.
It seems important to find the right Dr. who believes and supports a patient with his suggestions.
It is good for CIDP sufferers to read about other peoples stories since it tells us more than our doctors tell us.About exercising:
It is inspiring to hear that you can work out again and you seem to be getting back into your old shape.
For myself I cannot recommend to go back to physical exercise too early since it has caused relapses for me on a number of occasions.
Before the start of my CIDP I was about 55 and working out 4 hours a day, cardio and weights. This all stopped from one day to the next when I did not have the energy anymore.
I had buzzing and twitching muscles in my left leg with minor coordination issues on he left side and was diagnosed with peripheral neuropathy, also had nerve conduction test done showing some damage. I stopped drinking alcohol, started eating less carbs and took “Piracetam” and vitamin B. For 6 months was almost symptom free until I felt so good and went back to the gym. After one week I felt the progression of the neuropathy setting in again.
I had to stop all exercising or sports activity now almost 3 years ago.
Ever since, when I feel really good and start doing more physical work the neuropathy now diagnosed as CIDP is flaring up badly.My conclusion:
Someone getting back to his old routines is blessed however, one must individually find his own limits.
I would also throw this question out there:
How are extreme physical exercise or burnouts related to the occurrence or relapses of CIDP???
I have read about anecdotal evidence that it could be related in some cases.Update:
I started Prednisone a bit over 2 weeks ago with 50mg/day.
After 10 hours I started feeling better than I felt in a long time.
Steady gradual improvements of most of symptom over the following week.
Pain reduced by 50%
Muscle twitching reduced by 50%
Energy level up by 200%
Impairment in movement and loss of sensation (both minor at this stage) almost unchanged.
It feels the inflammation in my spine and whole body has stopped but so far no healing has commenced. Inflammation was my my main complaint every time I went to see a neurologist the last two years but nobody seemed to take me serious enough to prescribe Prednisone.
This highlights what others on this forum already mentioned, it is vital to find a specialist with the right experience.
I shall update when I know more.Hi Ausvolz
From my experience with Intragam which I received in Australia I can say the following:
– The IVIG product I received was already 32 grams in 325ml solution
– The prep and flush liquid added about almost another liter (already adds up to about 1.3kg per day of treatment)
– The nurses kept topping me up with water since everybody says you need to stay hydrated to avoid headaches.
– Add or take a little tolerance to that and I would say you are at the 2.5kg you mention and I believe that to be part of the normal procedure. Water or weight shouldn’t appear from nothing.
Having said that, since I had IVIG I feel that my legs are more puffed up and feel almost swollen. That is still the case now almost 3 months after my one week treatment.
Since my IVIG treatment was making my neuropathy worse I stopped IVIG and have been on Prednisone for the last few weeks. I felt instant relief after 10 hours and have regained a lot of my energy within days. Almost no side effects on 50mg/day just some slight difficulty falling asleep.
I wonder why I had to wait 2 years to get this simple and effective medication while watching my health deteriorate…Thanks to everybody for your replies!
I now read a number of the other posts and yes have not come across another story of anybody complaining about worsening symptoms from IVIG.
I am still very convinced though that my “symptoms” have been getting worse from he second day after the start of IVIG and now about 7 weeks after my last treatment I find that progression of symptoms has been slowing down for the last 2 weeks which is in line with the IVIG slowly wearing off. This brings me closer to the state where I was before starting IVIG but overall worse, and certainly no sign of improvement whatsoever.
Sometimes when I get a flu my neuropathy symptoms get worse and nerves hurt a lot and it feels like with every infection I am degrading a bit further. IVIG so far felt like I had one very strong huge long flu infection.I mentioned Rituximab to my Neurologist and he said he cannot describe it to me and it would not be the right medication but recommended Prednisone.
I suggested plasma exchange but he was not ok with that either and wanted to try the Prednisone first.
I guess it will be a trial and error scenario….