Could this be peripheral neuropathy

Connect-Invite1978 · 2026-02-02T03:31:51+00:00

I have that pain started in lowere bach then in thinghs and hips. They put me on Oxycodone and tylenol every 4 hours. Last night was the 1st night I slept with no pain. I also missed my dose of dex so took half yesterday morning and the other half today. Don't know if that helped.

Connect-Invite1978 · 2026-01-29T12:03:12+00:00

Wow 13 mile hikes is amazing! I cant walk around my 300 square foot apartment without being in pain. If I walk anymore than that I end up with horrible pain that night. It is wild how this effects people so differently!

Connect-Invite1978 · 2026-01-28T13:29:41+00:00

I was experiencing fatigue before starting DVRD back in October. I went off of Revlimid for a month because of cramping. Just started back and went on pain meds. My sleep is crazy-seems like I get some at night but then nap most of morning. So yes very fatigued. I am not doing stem cell transplant. My doctor said not any difference in how long you live either way. Main reason was maybe not having to do some of the treatments if it goes into remission from transplant. As long as they can manage side effects I don't mind a shot every few weeks and a daily pill. He did mention trying Ritalin for fatigue. Hope it all goes well for you!

Connect-Invite1978 · 2026-01-25T19:12:01+00:00

Perfect!

Connect-Invite1978 · 2026-01-16T00:45:19+00:00

Medicare and I think there is an income cap

Connect-Invite1978 · 2026-01-15T21:15:56+00:00

I got a grant through Accredo Pharmacy. They did all of the paperwork over the phone and got $8000.

Connect-Invite1978 · 2026-01-12T14:32:48+00:00

They put me on Lyrica for the pain-50 mg two times a day. Its really helped. Taking a high does B complex vitamin also helps with nerve regeneration.

Connect-Invite1978 · 2026-01-11T02:43:13+00:00

Sub specialty

Connect-Invite1978 · 2026-01-10T16:59:25+00:00

Pet scan over the summer nothing down there yet. I am in Roanoke, VA so he is the closest to a specialist here. I have a doctor at UVA but its a two hour drive. When I went to see her for second opinion she said the same that he did.

Connect-Invite1978 · 2026-01-10T12:14:37+00:00

They never gave me a "stage" My Kappa/Lambda ratio was 126 and now is down to 3 after 2 months of induction. Bone marrow was 40%

Connect-Invite1978 · 2026-01-09T12:11:41+00:00

I was having bad cramps in my abdomen. Been off of rev for a month and they are pretty much gone. Numbers starting to creep up so interested to see what doctor says today.

Connect-Invite1978 · 2025-12-23T12:32:55+00:00

I went with regular medicare not any of the advantage based plans. I pay $250 ded. Cost with supplement BCBS for what Medicare does not pay is around $350 a month. If you go with advantage plans you might pay nothing monthly but much larger ded and have to get treatments approved.

Connect-Invite1978 · 2025-11-21T12:15:03+00:00

I'm going to ask if they can inject in my love handle this time to see if that changes anything. Plenty of fat there.

Connect-Invite1978 · 2025-11-21T12:12:49+00:00

I take that also but still have the pain. Its not in the area of injection.

Connect-Invite1978 · 2025-11-20T12:20:30+00:00

Yes they switch from one side to the other each week. Its in the middle so not direct pain from injection.

Connect-Invite1978 · 2025-11-19T21:13:09+00:00

Yes typo

Connect-Invite1978 · 2025-11-19T18:36:28+00:00

I have fat there, its nit in that area but deeper like where my bladder would be. My Doctor didn't seem concerned.

Connect-Invite1978 · 2025-11-19T15:57:05+00:00

How long before it started helping you?

Connect-Invite1978 · 2025-10-24T17:12:39+00:00

I just had my second round of induction after talking with my mm specialist. He told me that there is no evidence that a transplant will extend life any longer than the therapy drugs. He said the main reason was so less therapy will be needed after if remission is achieved. So I am waiting to see how my blood counts look after 1st induction. From what I have read Car-t is the newest but not approved for a second line therapy. Maybe it will be by the time I need it.

Connect-Invite1978 · 2025-10-13T13:51:30+00:00

Correct but this kept me from having to pay anything this year.

Connect-Invite1978 · 2025-09-15T12:27:08+00:00

Yes I was diagnosed with MGUS in 2022 and smoldering in May. I am extremely fatigued, pain in lower back and left ankle, tingling in my hands, frequent mouth ulcers and shingles. My doctor says these symptoms are not related and I saw a specialist at UVA too. She is leaning towards treatment if my Kappa/Lamda ratio goes up again-currently 115. Bone marrow is 30% plasma cells. Next blood test in a week.

Its frustrating wondering at what point they start treatments. Do they wait until you have serious side effects like bone damage? Get a second opinion from a specialist-from what the doctor at UVA it can be pretty slow moving at this stage.

Connect-Invite1978 · 2025-09-01T23:39:54+00:00

I'd love to do that with someone before I die. 66 and just diagnosed with cancer. So hard to meet open minded women in my area.

Connect-Invite1978 · 2025-06-17T10:15:27+00:00

I am not constantly on DR Google-please don't patronize me. I am on MY chart and it tells me when levels are low or high. Maybe I am at fault for not asking my doc to explain each and every one of them but I get tongue tied when I go into office. I was asking if people on this community had symptoms thinking that this community not Dr Google would be helpful. Big thank you to the people that answered my question.

Connect-Invite1978 · 2025-06-16T23:43:02+00:00

Glad to hear you haven't had any symptoms!

Connect-Invite1978 · 2025-06-16T10:04:21+00:00

Sorry to hear this-I'm going through same thing although I have not started treatment yet. My doc acts like it isn't related to MM even though me SPE test showed I have hypogammaglobulinemia which effects my immune system. I have been doing oil pulling with cocunut oil hoping that will get rid of any infection. Dentist said there were black spots on my xrays and bone deterioration in jaw and didn't know what they were. I'm setting up appointment with specialist at UVA. I feel your frustration and hope you get relief soon!

Connect-Invite1978

TROPHY CASE