Experiences with

Neuropathies

My gait and balance are both terrible, and I have been diagnosed with FMD. The only treatments which have been suggested to me are physical therapy and cognitive behavior therapy. Both are totally ineffective for me. Does anyone know of other treatments for FND/FMD which affects ONLY GAIT AND BALANCE

Hi I’m new to the forum but have reading all your posts and do not feel alone in this awful condition of PMR. I was diagnosed October 2021 at the age of 60. I have had 3 relapses since them and after reading your posts feel this could be due to my prednisone being reduced too quickly. My consultant

Hi all, hope everyone is feeling some evening rest! So this week I have had a terrible flare up and have felt bed ridden.. I have my boys to look after and it’s the summer hols of course. Just wondering if anyone has any advice or ideas on ways to manage family life and resting ? I mean I just get

I've now had an appointment with Dr Mackie and as my blood results are all satisfactory I've got the go-ahead to have a glass of wine now and then - yay! I've been trying a few alcohol free (0.5%) beers, a few of which are OK. I prefer ones that are less citrussy, like Lucky Saint. All seems to be

*** I ended up with High Blood Pressure taking TTFD. I no longer take TTFD. Based on my experience, I would not recommend TTFD. *** Someone asked, if I ever heard of NADH? I believe when a cure is found for PD, it will a combination of factors. I take NMN which supposedly increases NAD which is the

Hello, I have primary lower leg lymphedema, and currently am uncontrolled in the left leg. My chiropractor has offered to do cold laser therapy to see if it will help my leg swelling go down. I am a little nervous, but am also frustrated that the swelling hasn't improved since my fall in March.

I'd like people to share what supplements/drugs they are using. The more the better. We could all learn from each other. This might not be clear. I made it in a word doc with tables and then had to butcher it up to add it to this post. Let me know. Supplements and Drugs Supplements are very unlikely

I’ve had PM since March 2016 but finally diagnosed September 2016 and prescribed 20 mg Pred, quickly reduced to 15 mg and then 10 mg. Slow reduction after that, kind of tricky reducing after 7 mg but I’ve finally reduced to 3 mg. this year. At 4 mg I felt great and reduced to 3 mg. very slowly. I’ve

Yikes! According to RXlist.com you should NOT take Methylene Blue and Levadopa: https://www.rxlist.com/drug-interactions/methylene-blue-oral-and-levodopa-oral-interaction.htm "methylene blue oral and levodopa oral methylene blue oral and levodopa oral both increase affecting serotonin levels in the

I completed salvage radiation around a year and 3 months ago. Since then I’ve had issues with my gut, specifically cramps in the morning and irregularity. This week I had a routine colonoscopy and asked the doc to advise whether he could see any damage resulting from radiation. He advised that I have

Edit 3 June 2022: Yikes! According to RXlist.com you should NOT take Methylene Blue and Levadopa: https://www.rxlist.com/drug-interactions/methylene-blue-oral-and-levodopa-oral-interaction.htm "methylene blue oral and levodopa oral methylene blue oral and levodopa oral both increase affecting serotonin

I completed my 12 months Obinutuzumab/Venclexta treatment regimen March 1st. I go tomorrow (Friday, May 27, 2022) for my first doctor visit since ending treatment. I feel great. No problems that I know of....BUT. Yesterday I went to the lab to have blood drawn and tests run in preparation of my

To all of you struggling with gate, see a neurologist if you haven't already. I had an ataxia gait and it was pretty bad. An MRI showed an arachnoid cyst in my spine from T1 to T10 that was compressing my spinal cord and thus the nerves, causing the issue. After removal I could walk a bit better and

I take both. I just ordered more regrettably as I’m now reconsidering the evidence behind both. I know many others on HU take them as well. What is the science to explain why? My reason for taking ALA is a lame one. Dr. David Sinclair does. But as I look in to this more I think that maybe neither

Good morning community, Is there anyone out there experiencing severe hand stiffness/loss of hand function/balling up? My Neuro initially thought it was contributed to chronic inflammatory demyelinating polyneuropathy (CIDP) on top of my battle with PPMS (primary progressive). After many visits to neuromusculars

Hello! I am curious and wonder how many people, like myself, get fairly unbearable pain at times. Mine is especially in my legs. I take Hydrocodone every six hours. I haven't known of others who also take a narcotic, hence my asking the community. FYI: I am on the highest dose. I really do not

Searching the web, people have been talking about Methylene Blue for PD for at least 10 years. Has anybody tried it? Any details to share? Edit June 3rd 2022: Yikes! According to RXlist.com you should NOT take Methylene Blue and Levadopa: https://www.rxlist.com/drug-interactions/methylene-blue-oral-and-levodopa-oral-interaction.htm

my feet and ankles are scaling. ankles feel stiff .this has happened during pandemic. i was advised use of plain petroleum jelly. i am also using dr. foot's' foot heel gel' but hardly any relief. any advice i am diabetic since 1996 and 88 years of age

Hi wanted to ask which sites/companies are best to purchase B12 for self administration. Is it supplied in preloaded syringes or pens like insulin. Which brands, suppliers have given best results?

BUT my neuropathies have gone WORSE than ever (burning feet and skin, tingling in hands). Could these iron pills be the cause? Anyone with the same experience?