MDS and peripheral neuropathy

[Cheryl C]

I've recently had a bout of left sided shingles - possibly caused by the stress of looking after three grandchildren 6, 8 and 9 for several weeks (ongoing) while their mother has been away sick. At the same time I had a very nasty chest and sinus virus. I had a couple of nights in hospital at one stage.

Since then I've noticed my left toes and thumb and another couple of fingers on my left hand are constantly tingly. I guess it's caused by nerve damage from the shingles, but I seem to recall forum members mentioning peripheral neuropathy also. My research indicates that it can be a side effect of MDS. My immune system has taken a real battering lately.

I'm interested to know if anyone has overcome this problem or if it's permanent once it emerges. Thanks for your input!

[Marlene]

Hi Cheryl,

So sorry you have deal with PN. Even though John doesn't have MDS, he was hit hard by peripheral neuropathy. Much of what I learned about nutrition was because of his PN, which coincidently was relevant to his blood disorder.

Whether or not it's permanent depends on the cause. John's was really bad. In the beginning, if you asked him on a scale of 1 -10 the pain level, it was about an 8 or 9. He was miserable. It took a lot of research and multiple approaches to get him to where he is now which would be around 1 -2. Sometimes, it's just a matter of time and the nerves recover on their own. Today, his feet are close to normal but I don't think the nerves will ever fully recover. His feet get really hot quickly so summer time is the most uncomfortable time for him.

He too had shingles but the PN was present before the shingles. I would say that it makes it worse for a while.

So many things can cause or contribute to PN. Toxic damage from medicines or alcohol, illnesses, autoimmune issues, nutritional insufficiencies, structural problems, thyroid issues, mitochondrial damage.... just to name a few.

If possible, try to figure out if the trigger was the shingles or if it was the viral infection or the medicines you were on while in the hospital. It may then provide a clue as to potential strategies you may want to explore. The only other thing worth mentioning since you do have MDS, is to look into the MGUS protein if it continues or progresses. Usually, with MGUS, it's bilateral damage so this would not be high on my list to check out at this point since yours is just on the left side.

http://www.ncbi.nlm.nih.gov/pubmed/1656848

If you are interested on the nutritional aspects of treating PN, let me know.

Marlene

[beverly]

We just joined Marrowforums and are SO happy to see active posts, unlike the MDS foundation. My husband (David) was diagnosed with MDS as well as PNH in August 2014. At this time, he is being well managed with the PNH diagnosis with SOLIRIS. The MDS is much more difficult. He is receiving Azacitidine 5 days q wk, once a month. Recently, his HCT, HGB, WBC and RBC have been falling. He had 2 units packed red cells 3/18 and again 4/11 Our question is: has anyone tried CBD for bone marrow health and/or Fucodian? Also am interested in reading experiences with CAMPATH and with telomeres. Thank you in advance! Beverly and David

[Marlene]

Beverly,

Here are two threads you may want to read. The first is on CBD. Unfortunately, most don't come back and report on their experience. The second is Greg's experience with shorten telomeres, Campath and Danazol.

http://forums.marrowforums.org/showt...&highlight=cbd

http://forums.marrowforums.org/showthread.php?t=2427

Marlene

[maggiemag]

Hi Cheryl,

Sorry you have to deal with this; Shingles is bad enough, I hear. Incidentally, my heme/onc will not let me get the shingles vaccine b/c I have MDS. Any of you ever get the vaccine after diagnosis?

As for the peripheral neuropathy, I got it from Revlimid. I started having trouble walking, like I was drunk sometimes, and had a couple of minor falls. I knew it wasn't in my head, so I saw my neuro who agreed I had PN. He did an obscure lab test for POEMS syndrome as I have some of the features, including MGUS, but decided it was from the Rev. Luckily, I do not have the pain angle, but numbness of the toes which is why my balance was off. Since the drug was dc'd, it has improved a little, but will never go completely away, according to the internist and heme/onc. My toes/feet sometimes feel "wooden" or like sticks, it's hard to describe. I'm not diabetic either, btw.

I just remembered that there was a discussion at the Chicago MDS conference on PN last fall, and the physician said there was a cream being studied for PN as a result from chemo, and that it was promising at relieving some of the pain. He said it would make my numbness worse though, so I never wrote down the name of the drug, sorry. Maybe that session was recorded, Cheryl.

Good luck!
Mags

[Greg H]

Originally Posted by beverly

Also am interested in reading experiences with CAMPATH and with telomeres. Thank you in advance! Beverly and David

Hi Beverly and David!

I'd be happy to chat within you about campath and telomeres, if I can be of help. The blog I put together on my two clinical trials at NIH may be of use. (Link below.)

I was at NIH a week or so ago and heard they are writing a new trial for Danazol for folks with short telomeres that will start with a lower initial dose, because it appears just as effectively as the high dose I had.

Is David classified as higher risk? Might I ask his age? Does he have Trisomy 8, or other reasons to think his MDS might be autoimmune in nature?

Feel free to email me directly if you prefer, though conversations on the forum do have the advantage of leaving a trail of breadcrumbs that others can follow in the future.

Best of luck to you!

Greg

[Cheryl C]

Marlene and Maggiemag - thanks heaps for your very helpful responses. They are much appreciated.

I'm quite health conscious so yes, I'm interested in what you have to say about nutritional ways of dealing with PN. While it's not painful at this stage, it's annoying as I feel as though I have been at the beach and have sand in my socks. I even took my socks off today just to check as I had actually been at the beach, but there was nothing there. Weird!

I don't know how to tell if it was the shingles or the MDS. I think I now have developed a a little PN in my right big toe as well. I'm currently at my son's place in Tasmania and am trying to wait until I get home to NSW in 3 weeks to see my usual GP so I can be followed up. However if I get a chance to see the haematologist here in Hobart while I'm having Intragam tomorrow I'll ask about it then.

[Marlene]

Cheryl,

I will send you a PM later with the specific things John did. But in the meantime, here is pretty good link regarding Chemo induced PN and therapies, both conventional and alternative.

http://integrativeoncology-essential...mo-neuropathy/

And an article on how antibiotic damage our cells.

https://www.sciencedaily.com/release...0703160623.htm

Marlene