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Experiences with
Mast cell activation syndrome (MCAS)
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Three and a half years with Mantle cell lymphoma
I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant. After my transplant I had
I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant. After my transplant I had
GT97
in
CLL Support
3 years ago
RLS COPING MECHANISMS
What I might do to calm my legs before bedtime: 1. Stretching 2. Messaging 3. Walking about 4. Drink a glass of water 5. Take a bath to relax 6. Make myself a cup of Pukka Nighttime Tea 7. DISTRACTION: Looking at old photo albums, play Bridge or Scrabble on phone, try on clothes, do my nails. 8.
What I might do to calm my legs before bedtime: 1. Stretching 2. Messaging 3. Walking about 4. Drink a glass of water 5. Take a bath to relax 6. Make myself a cup of Pukka Nighttime Tea 7. DISTRACTION: Looking at old photo albums, play Bridge or Scrabble on phone, try on clothes, do my nails. 8.
Felicity21
in
Restless Legs Syndrome
3 years ago
Should I be worried?
Hi, everyone, it’s me again! Another problem; I started to get a bloodshot eye about 3 weeks ago which hasn’t gone away. I contacted the drs surgery and they sent me to the pharmacy who sent me to the optician as an emergency. She did loads of tests and took photos, and informed me that I had a lesion
Hi, everyone, it’s me again! Another problem; I started to get a bloodshot eye about 3 weeks ago which hasn’t gone away. I contacted the drs surgery and they sent me to the pharmacy who sent me to the optician as an emergency. She did loads of tests and took photos, and informed me that I had a lesion
BPlady
in
PMRGCAuk
3 years ago
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For those taking more than 1200 mg of gabapentin, I have a suggestion
I take 1500 mg at night divided into 2 doses. 5 days after increasing it to that, I got restless legs again. So I took 300 mg at 5:15, 600 mg at 7:15 and 600 mg at 9:15 and this worked !!!
I take 1500 mg at night divided into 2 doses. 5 days after increasing it to that, I got restless legs again. So I took 300 mg at 5:15, 600 mg at 7:15 and 600 mg at 9:15 and this worked !!!
SueJohnson
in
Restless Legs Syndrome
3 years ago
B12 Testing
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
Pain12345
in
Pernicious Anaemia Society
3 years ago
Side affects of Tramadol!! Lower inhibitions and decision making skills…
Hello everyone. I was wondering if anyone else experienced strange side effects from the narcotics that they’re taking I am taking tramadol and before that I took a different opiate. I have found a really weird side effect while on both! I make decisions that are terrible; or at least highly questionable
Hello everyone. I was wondering if anyone else experienced strange side effects from the narcotics that they’re taking I am taking tramadol and before that I took a different opiate. I have found a really weird side effect while on both! I make decisions that are terrible; or at least highly questionable
serengazer
in
Restless Legs Syndrome
3 years ago
Is it OK to take Ropinirole AND Gabapentin?
I've been on Ropinirole for 4 years and (touchwood) haven't had any augmentation. A week ago I was prescribed Gabapentin for an entirely unrelated condition - I've damaged a nerve in my foot. So I'm now taking both. It's been a mixed blessing so far! From about the 4th night onwards I've had the
I've been on Ropinirole for 4 years and (touchwood) haven't had any augmentation. A week ago I was prescribed Gabapentin for an entirely unrelated condition - I've damaged a nerve in my foot. So I'm now taking both. It's been a mixed blessing so far! From about the 4th night onwards I've had the
Mattly
in
Restless Legs Syndrome
3 years ago
Miralax
Question I was asked this week Some people suffer from consolation from there medications . And of course all laxatives says no more than 7 days etc. I have a problem storing water in my bowel trued everything. Dr Glen advised I take Miralax which I bought in the USA . Ran out back in Australia
Question I was asked this week Some people suffer from consolation from there medications . And of course all laxatives says no more than 7 days etc. I have a problem storing water in my bowel trued everything. Dr Glen advised I take Miralax which I bought in the USA . Ran out back in Australia
Shumbah
in
Restless Legs Syndrome
3 years ago
New here. How do I support someone live through chronic pain
Pelvic neuralgias, Central sensitization, Interstitial-cystitis and
Mast
cell
activation
syndrome
.
Pelvic neuralgias, Central sensitization, Interstitial-cystitis and
Mast
cell
activation
syndrome
.
SylvanLibrary
in
Pain Concern
3 years ago
It's In The Family
I am retired and living back in the Cornish town of my birth. Although I have been a member of the Rls support group for many years I have just joined the forum. Rls was experienced by my paternal Grandmother, my father, one of his sisters, a cousin and now, as well as myself, my daughter is experiencing
I am retired and living back in the Cornish town of my birth. Although I have been a member of the Rls support group for many years I have just joined the forum. Rls was experienced by my paternal Grandmother, my father, one of his sisters, a cousin and now, as well as myself, my daughter is experiencing
caracalla
in
Restless Legs Syndrome
3 years ago
How much reduction in absorption of gabapentin is there if one takes more than 600 mg?
I have been taking 1400 mg gabapentin divided into 700 mg at 7:15 and 700 mg at 9:15, going to bed at 10:15. I increased this to 1500 mg on July 5th, with 700 mg at 7:15 and 800 mg at 9:15, but last night had restless legs. I know I should switch to pregabalin but it is expensive. I know that in taking
I have been taking 1400 mg gabapentin divided into 700 mg at 7:15 and 700 mg at 9:15, going to bed at 10:15. I increased this to 1500 mg on July 5th, with 700 mg at 7:15 and 800 mg at 9:15, but last night had restless legs. I know I should switch to pregabalin but it is expensive. I know that in taking
SueJohnson
in
Restless Legs Syndrome
3 years ago
My life with RLS, and the lengths I will go to for relief!
I am 58, and I have had RLS for 13 years. Or I was diagnosed 13 years ago. My story is crazy , and I'm sure some won't believe it. About 15 years ago I started having bad panic attacks! I would go to the ER. Several times a week. I was treated with Xanax. It worked well for me. But then I started getting
I am 58, and I have had RLS for 13 years. Or I was diagnosed 13 years ago. My story is crazy , and I'm sure some won't believe it. About 15 years ago I started having bad panic attacks! I would go to the ER. Several times a week. I was treated with Xanax. It worked well for me. But then I started getting
1Master11
in
Restless Legs Syndrome
3 years ago
Has anyone conceived naturally with PCOS?
Hello, I recently asked my gynecologist what my chances would be of conceiving naturally and he said 'I won't say zero but very low' which made me think all this time has been wasted with charting my cycles and hoping for pregnancy month after month. When I tell family members I have PCOS they brush
Hello, I recently asked my gynecologist what my chances would be of conceiving naturally and he said 'I won't say zero but very low' which made me think all this time has been wasted with charting my cycles and hoping for pregnancy month after month. When I tell family members I have PCOS they brush
CoralCats
in
Fertility Network UK
3 years ago
help with rls meds
Hi. Been awhile since I posted but hoping for advice. My husband has rls in all limbs he is taking gabapentin 2 100mg a night and still taking 1 1mg ropinirole. I understand he is most likely augmenting so hopefully he will decide to wean off. He goes to neurologist tomorrow and I want to find
Hi. Been awhile since I posted but hoping for advice. My husband has rls in all limbs he is taking gabapentin 2 100mg a night and still taking 1 1mg ropinirole. I understand he is most likely augmenting so hopefully he will decide to wean off. He goes to neurologist tomorrow and I want to find
Mustanggirlgirl
in
Restless Legs Syndrome
3 years ago
Seeking Holistic Remedies and Root Causes of RLS
Over the past few years, I've developed RLS and at the same time also tested positive for toxic metals like lead, mercury, aluminum and several others. Have also learned that this is an epidemic problem as these toxic metals have no biological benefit and yet are found in tap water, food, air, cosmetics
Over the past few years, I've developed RLS and at the same time also tested positive for toxic metals like lead, mercury, aluminum and several others. Have also learned that this is an epidemic problem as these toxic metals have no biological benefit and yet are found in tap water, food, air, cosmetics
JWBe
in
Restless Legs Syndrome
3 years ago
Morning everybody. I am looking for a quality CBD oil Any experiences please 😊
I am soon to be starting Temgesic for my restless limbs. Can anyone recommend a good quality CBD oil to help with any restlessness I may experience crossing over from my current Oxycodone med? I recognise that I may not need it, but just in case. Also the pain doctor recommended that I occasionally
I am soon to be starting Temgesic for my restless limbs. Can anyone recommend a good quality CBD oil to help with any restlessness I may experience crossing over from my current Oxycodone med? I recognise that I may not need it, but just in case. Also the pain doctor recommended that I occasionally
smilingjane
in
Restless Legs Syndrome
3 years ago
Ropinirole side effects
I have RLS in legs and nervous tension in arms, insomnia, I have been prescribed ropinirole and taking for nearly 2 years. has anyone side effects?
I have RLS in legs and nervous tension in arms, insomnia, I have been prescribed ropinirole and taking for nearly 2 years. has anyone side effects?
Cailen
in
Restless Legs Syndrome
3 years ago
Shingrix OK For Immunocompromised Adults
This article was posted today on CLLSLL groups.io and is reposted here with permission from Dr. Furman https://groups.io/g/CLLSLL/message/31608?reply=1 [i] Re: Shingrix OK For Immunocompromised Adults [/i] [i]From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT[/i] [i]-[/i] [i]Shingles is the result
This article was posted today on CLLSLL groups.io and is reposted here with permission from Dr. Furman https://groups.io/g/CLLSLL/message/31608?reply=1 [i] Re: Shingrix OK For Immunocompromised Adults [/i] [i]From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT[/i] [i]-[/i] [i]Shingles is the result
lankisterguy
Volunteer
in
CLL Support
3 years ago
The one Restless Limb that may have saved me years of trouble.
Back in the day when I was first starting medications to treat my RLS the doctor started with Mirapex and then Requip. At the the lowest dose of each there was quite a reaction. I can "firmly" say that I could not tolerate these medications because they caused painful priapism. Not a very common reaction
Back in the day when I was first starting medications to treat my RLS the doctor started with Mirapex and then Requip. At the the lowest dose of each there was quite a reaction. I can "firmly" say that I could not tolerate these medications because they caused painful priapism. Not a very common reaction
ziggypiggy
in
Restless Legs Syndrome
3 years ago
Tocilizumab treatment extension, and latest PET-CT scan results
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum). 2 days later, my Consultant emailed me to say that she
Suzita76
in
PMRGCAuk
3 years ago
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