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Giant axonal neuropathy
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Did anyone had long lasting effects from an EMG/NCS?
Mine was absolutely awfull. Electrical shocks felt like I was getting electrocuted. I’m on the small side 52 kg ( 114 pounds) and 1m59 (5,2 feet) and my guess is that the doctor used too high of a voltage. The doctor had problems with the machine and was very frustrated and in a bad mood. He kept zapping
Mine was absolutely awfull. Electrical shocks felt like I was getting electrocuted. I’m on the small side 52 kg ( 114 pounds) and 1m59 (5,2 feet) and my guess is that the doctor used too high of a voltage. The doctor had problems with the machine and was very frustrated and in a bad mood. He kept zapping
Tess2222
in
Pernicious Anaemia Society
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
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Peripheral T-cell Lymphoma update
Update December 21 I introduced B1 to my oncologist saying it gave me 5 years of control. He said he did not recall that in his college days. Today, oncologist in Las Cruces , Memorial Cancer Center said the chemo therapy I received at Gerald Champion Cancer in Alamogordo was not necessary. The Memorial
Update December 21 I introduced B1 to my oncologist saying it gave me 5 years of control. He said he did not recall that in his college days. Today, oncologist in Las Cruces , Memorial Cancer Center said the chemo therapy I received at Gerald Champion Cancer in Alamogordo was not necessary. The Memorial
Hidden
in
Cure Parkinson's
3 years ago
My Dislike For Lyrica Grows by The Day
I also dislike mysteries. I like understanding. The other day a member posted that the first time he ever had RLS in his 30 years of life was shortly after he went cold turkey off of Pregabalin, which he was taking for other reasons. It absolutely has the tendency to do this. I will post case reports
I also dislike mysteries. I like understanding. The other day a member posted that the first time he ever had RLS in his 30 years of life was shortly after he went cold turkey off of Pregabalin, which he was taking for other reasons. It absolutely has the tendency to do this. I will post case reports
Hidden
in
Restless Legs Syndrome
3 years ago
Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
3 years ago
Lyrica Withdrawal
Hi everyone I've been on Lyrica 200mg for my RLS along with Oxycodone for about 9 months and I recently stopped the Lyrica and since have had horrible feelings of emptiness, sadness and anxiety. Has anyone else gone through this after quitting Lyrica?? Thanks for your responses 🐱
Hi everyone I've been on Lyrica 200mg for my RLS along with Oxycodone for about 9 months and I recently stopped the Lyrica and since have had horrible feelings of emptiness, sadness and anxiety. Has anyone else gone through this after quitting Lyrica?? Thanks for your responses 🐱
nytexan14
in
Restless Legs Syndrome
3 years ago
Myositis
Does anyone on here have myositis as I'm worried I may have this condition as I have aching muscles most of the time. Don't know if it's side effects of high dose statin I'm on or possibly myositis, but either way,it's making me think there's no hope for my future.
Does anyone on here have myositis as I'm worried I may have this condition as I have aching muscles most of the time. Don't know if it's side effects of high dose statin I'm on or possibly myositis, but either way,it's making me think there's no hope for my future.
sobs1962
in
Thyroid UK
3 years ago
Memory and Gabapentin/Lyrica Question
I was taking Gabapentin for about 2-3 weeks and started to notice issues with memory. It became such a problem I stopped taking it. I know Lyrica can also cause that issue as well. Had anyone been in this situation where they switched to Lyrica and had no memory issues? My PT said I should try Lyrica
I was taking Gabapentin for about 2-3 weeks and started to notice issues with memory. It became such a problem I stopped taking it. I know Lyrica can also cause that issue as well. Had anyone been in this situation where they switched to Lyrica and had no memory issues? My PT said I should try Lyrica
CAT1866
in
Pelvic Pain Support Network
3 years ago
Trigger shot for FET
Hi all, I just wanted to crowdsource something. I am currently attempting a "stimulated" FET where I take low dose gonal-F in the lead up to try and help my slow and thin lining develop with my own estrogen. It's going... okay but not great. During my scan today (CD 13), I have a bunch of follicles
Hi all, I just wanted to crowdsource something. I am currently attempting a "stimulated" FET where I take low dose gonal-F in the lead up to try and help my slow and thin lining develop with my own estrogen. It's going... okay but not great. During my scan today (CD 13), I have a bunch of follicles
Hoop123
in
Fertility Network UK
3 years ago
Slowly improving
After over two weeks of terrible legs (after coming off mirapexin) I think the gabapentin is starting to work. The last 3 nights were awful with hardly any sleep but last night with tramadol of course I slept all night and tonight without tramadol I slept at around 11. Unfortunately I woke up half an
After over two weeks of terrible legs (after coming off mirapexin) I think the gabapentin is starting to work. The last 3 nights were awful with hardly any sleep but last night with tramadol of course I slept all night and tonight without tramadol I slept at around 11. Unfortunately I woke up half an
Memmy
in
Restless Legs Syndrome
3 years ago
Help with one problem is causing another one
Not sure if I have to ask a question about RLS only as I don't really have a problem with that. My question is related to the medication I am taking for my Neuropathy. I was taking Gabapentin a couple of years before switching to Lyrica because it wasn't working for me. I would like to know if anyone
Not sure if I have to ask a question about RLS only as I don't really have a problem with that. My question is related to the medication I am taking for my Neuropathy. I was taking Gabapentin a couple of years before switching to Lyrica because it wasn't working for me. I would like to know if anyone
wbdetroit
in
Restless Legs Syndrome
3 years ago
Piles
Following the serve constipation and staining I now have horrendous external piles. Very painful, does anyone have any advice on what’s best to use to help?
Following the serve constipation and staining I now have horrendous external piles. Very painful, does anyone have any advice on what’s best to use to help?
Bassem1979
in
IBS Network
3 years ago
Re: "A Possible Solution For ... Peripheral Neuropathy ..."
By the time I got around to responding to Nalakrat's post, he had over 3 dozen repiles & who know how many who read but did not respond. On the basis that those people would not get to read a late post, I started this one. I have some interest in this going back to 2016 when my wife was on Velcade,
By the time I got around to responding to Nalakrat's post, he had over 3 dozen repiles & who know how many who read but did not respond. On the basis that those people would not get to read a late post, I started this one. I have some interest in this going back to 2016 when my wife was on Velcade,
pjoshea13
in
Advanced Prostate Cancer
3 years ago
Neuropathy or rls?
We often get people on here asking if they have rls, and describing their symptoms as "burning or tingling". This short study gives a description of the title. https://www.sciencedaily.com/releases/2021/10/211027172626.htm It begs the question as to whether we should ask people about their BMI or obesity
We often get people on here asking if they have rls, and describing their symptoms as "burning or tingling". This short study gives a description of the title. https://www.sciencedaily.com/releases/2021/10/211027172626.htm It begs the question as to whether we should ask people about their BMI or obesity
Madlegs1
in
Restless Legs Syndrome
3 years ago
Has anyone tried oxymorphone?
Hi, has anyone here tried oxymorphone for RLS? oxymorphone is similar to oxycodone but with much less sleeping difficulties in comparison with oxycodone. I have been doing extensive research for an opioid which exerts less sleeping difficulties because the oxycodone I am taking gives me severe insomnia
Hi, has anyone here tried oxymorphone for RLS? oxymorphone is similar to oxycodone but with much less sleeping difficulties in comparison with oxycodone. I have been doing extensive research for an opioid which exerts less sleeping difficulties because the oxycodone I am taking gives me severe insomnia
halperinchen
in
Restless Legs Syndrome
3 years ago
Memorial Sloan Kettering, NYC
Met w Dr Deaglin McHugh, Oncologist, and Dr Jonathon Coleman, Surgeon. Both said my numbers (PSA down to .56 and full blood panel) look good. Nano Knife not the answer (yet) for Advanced Stage PCa, but May work well for some sensitive hard to get at areas. Phase 1 Trial underway w Nano Knife for Intermediate
Met w Dr Deaglin McHugh, Oncologist, and Dr Jonathon Coleman, Surgeon. Both said my numbers (PSA down to .56 and full blood panel) look good. Nano Knife not the answer (yet) for Advanced Stage PCa, but May work well for some sensitive hard to get at areas. Phase 1 Trial underway w Nano Knife for Intermediate
Spyder54
in
Advanced Prostate Cancer
3 years ago
Neurologic vs physical symptoms of PD
Is it possible to have no physical symptoms but have neurologic symptoms? I don't have bradykinesia or balance problems or freezing. I take rytary daily. I spend hours jogging or using a treadmill in bad weather. I use a motorcycle to get around. How can I convince others that my mind still
Is it possible to have no physical symptoms but have neurologic symptoms? I don't have bradykinesia or balance problems or freezing. I take rytary daily. I spend hours jogging or using a treadmill in bad weather. I use a motorcycle to get around. How can I convince others that my mind still
kaypeeoh
in
Cure Parkinson's
3 years ago
Acupuncture to Manage Pain?
Hi everyone! I am just wondering if anyone has tried acupuncture therapy for managing abdominal issues/pain and how it worked out for you? I have read that some oncologists do suggest acupuncture to their patients who have had gynecological surgery and curious about any real life examples of success.
Hi everyone! I am just wondering if anyone has tried acupuncture therapy for managing abdominal issues/pain and how it worked out for you? I have read that some oncologists do suggest acupuncture to their patients who have had gynecological surgery and curious about any real life examples of success.
Stuee01
in
My Ovacome
3 years ago
NHS app health record says my GCA is minor!
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
Broseley
in
PMRGCAuk
3 years ago
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