What's going on?: Do you feel like sharing... - My MSAA Community

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What's going on?

greaterexp profile image
72 Replies

Do you feel like sharing about your upcoming appointments for March? I'm personally beginning to think my neurologist doesn't like me anymore. Not really, but I haven't been to her for months. Did see my PCP yesterday and received some gabapentin for the leg pain I've had for years, but which is keeping me up at night. Hurrah!

Tell about what's going on with you, if you'd like. We care.

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greaterexp
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72 Replies
lbenmaor profile image
lbenmaor

I hope your leg pain gets better. I'll be seeing my Chiro. and eye Doctor.

Leslie

greaterexp profile image
greaterexp in reply to lbenmaor

Thank you. Hope your appointments go well.

erash profile image
erash

Is the gabapentin helping?

greaterexp profile image
greaterexp in reply to erash

No leg pain today, but I’m armed for when it comes back. The restless leg thing has happened lately along with the pain, so the gabapentin should help with that, too.

erash profile image
erash in reply to greaterexp

Hope it will 🤞

mrsmike9 profile image
mrsmike9 in reply to greaterexp

I was put on that awhile ago for foot pain. Didn't touch it. Felt like it was a placebo. I couldn't tell any difference. So unfortunately I have to put up with it.

greaterexp profile image
greaterexp in reply to mrsmike9

Did you try increasing the dosage?

mrsmike9 profile image
mrsmike9 in reply to greaterexp

No. I thought 2 times 0 is still 0.

in reply to mrsmike9

Same here. For the feet pain and fibromyalgia. It helped at first and then she had to keep upping the dose. I’m at 2400 a day. But pain is back and she doesn’t want to add to my medicines I’m already on, so I’m going to up my methadone and hopefully that helps. I hurt so bad today. I’ve been up since 1am and I can’t get comfortable. I just hurt all over. I just want to get a little relief because this is ridiculous, the suffering that I’m going through right now. Is that what MS does to people?

Sibrina profile image
Sibrina in reply to

It does it to me sometimes. There are times that I get profound all-over pain that hits me and lasts from 5 to 30 minutes. All there is to do is try to breath through it and often cry too. Hoping it doesn't start to go longer than the 5 to 30. I hope you start to get relief soon!

I think I already shared....Wednesday, I saw my PCP to go over my neck/spinal MRI. I was not prepared to here about being referred to a neurosurgeon now also.

They are not ruling out MS, but my spinal cord is referred on the MRI as "severe".

I got copies of both MRI reports before I left his office and have been looking info up on multiple sites. I had alot of questions wrote down for my PCP visit.....but now I await my first Neurologist appointment on the 10th. I will have alot more questions written down for him also.

After tears on Wednesday, I am feeling better and am looking forward to answers...I hope.

Again, I think the world of this site and all of you, for encouragement, knowledge, experiences, laughter. I even told my PCP about this website. Thank you all.

God bless.

mrsmike9 profile image
mrsmike9 in reply to

I think it's common to have delayed tears. I was relieved to find out why I kept falling and a couple days later I spent the day in bed crying.

pamgarner profile image
pamgarner in reply to

that is what I was diagnosed with my first mri with primary dr.he send me to neurosurgeon for what he thought was back problems,after mri with him,he told me I had spinal stenosis in back and neck and he is the dr. that sent me to neurologist and 2 more mri, and the rest is history.best to you, you't get to the bottom of it

TonyiaR7 profile image
TonyiaR7 in reply to pamgarner

Definitely try to avoid surgery if possible. My cervical spine MRI is terrible. I am approaching spinal stenosis and other issues. Did exercises and yoga ... helped for a while. Pain medication helped initially no longer effective. Hope you get the answers you need.

kdali profile image
kdali

Val Monday, Val Tuesday, my infusion on Thursday...still have not visited my PCP 🤣

greaterexp profile image
greaterexp in reply to kdali

Let us know how they all go.

kdali profile image
kdali in reply to greaterexp

Well, I took a sneak peek at the scale and Val has gained another 3lbs 😵🤷‍♀️🤣👏 so her MD will be pleased! Her other one is for a night brace to keep her hip growing properly.

greaterexp profile image
greaterexp in reply to kdali

Tell her to slow down on the growing! Actually, I'm tickled pink that she's growing well. It's just always too fast.

kdali profile image
kdali in reply to greaterexp

🤣🤷‍♀️

Ty!! 🥰 Yes, there’s not enough time to absorb their daily cuteness 😕

Allen5280 profile image
Allen5280

Got a phone call a little earlier and I have my first visit from my new therapist/councilor on Tuesday at 2. She will be coming here for my sessions. I'm a bit nervous that after the appointment there may be a van with a couple big guys in white with a funny jacket for me. 😯

jimeka profile image
jimeka in reply to Allen5280

Send pics if they do 😂 joking apart, you will do fine Blessings Jimeka 😂

greaterexp profile image
greaterexp in reply to Allen5280

I’ll keep praying for a good visit. Don’t worry. If they take you away, we’re all going with you.

Boxofchocolates profile image
Boxofchocolates

First Ocrevus infusion March 4th!

greaterexp profile image
greaterexp in reply to Boxofchocolates

Hurrah!

jorrell profile image
jorrell in reply to greaterexp

I have my first full one March 17th... still kickin'

rjoneslaw profile image
rjoneslaw

I have had a boat load of dr appointments. A lot my appointments happened in Jan and Feb but I do have appointments in March eye dr, heart dr, pcp.

I try to get my appointments out of the way by grouping them around the same time so I don’t have to go out every month. I have Dr appointments every 6 and 3 months

greaterexp profile image
greaterexp in reply to rjoneslaw

That’s a smart way to do it if you can.

mm1527mm profile image
mm1527mm

Hope your leg pain feels better. First full infusion at some point in march. They wont schedule me until my blood work comes back but when i went they missed some bloodwork on the prescription so i now need to go for more bloodwork next week.

greaterexp profile image
greaterexp in reply to mm1527mm

I hope all goes smoothly!

mm1527mm profile image
mm1527mm in reply to greaterexp

Thank you!

jimeka profile image
jimeka

Hope and pray gabapentin works, I take pregablin for mine, once it clicks in it does its job. January and February have been full of appointments but thankfully March I only have the bladder nurse. Having to do an in and out flow chart is a real pain, and I have to go for a blood test to have my kidney function checked.

The FES is coming to the house and bringing me a letter so I can fly with it so they don’t think I am going to blow the plane up. 😂 keep us posted on the gabapentin 😊

greaterexp profile image
greaterexp in reply to jimeka

I’m sorry about the bladder/kidney thing. Please let us know how it goes. I am glad to know you have something to help with that restless leg problem.

Kenu profile image
Kenu

Go to neurologist in couple weeks for 6 month check up. 🙏😉 Ken 🐾🐾

Midnight-Blue profile image
Midnight-Blue

I’ve been taking Gabapentin ever since I had back surgery back on ‘09 but my PC had me cut back dose-age because of my low weight. My Neurologist just followed & I didn’t want to say anything since I was also see a Pain Management MD (Still am.) so I wasn’t in any pain. Now it’s just a matter of mind over matter as to pain 🤷🏼‍♀️But, since I’m on here let me get an opinion or two ( Or 3 or 4 or ...!) I have an older sister. It’s just the two of us. She’s 6 1/2 yrs older than me. Has a totally different lifestyle than, complete with a beautiful house, “perfect” daughter & son-in-law (With a “perfect” job.). She doesn’t have to work: live in beautiful home complete with pool (I have never been invited to visit.) They have the perfect “entitled” (I think) daughter. And, here am I.

I live on Social Security (with my BF over 25 yrs who is now semi-retired.) He owns a Roofing Company & his 2 sons work with him. And, I’m OK with my life but: Please, do not tell me about the cruises you took & what you saw. Don’t tell me how wonderful my great-niece is doing when my son & his family are having financial difficulties. Don’t tell me about my niece & their camping trips, etc. Understand that

I have MS. Don’t treat me like I have a dam cold that when I wake up tomorrow my MS is gone! Because it ain’t going to happen!

And, I’m not going to win the lottery!!!!

mrsmike9 profile image
mrsmike9 in reply to Midnight-Blue

"Perfect" people like that annoy me. I'm sure they have their problems but but I would trade them!

Mjcarbo profile image
Mjcarbo

I recently was having a bad episode, got very dizzy and faint and had a bad fall. I was unconscious and/or semiconscious for three days. My postal lady and a neighbor became concerned and called 911. I was badly dehydrated and my kidneys were a concern. I was in the hospital for a week, but couldn’t walk at all and my speech was slurred. I am now at a convalescence center recuperating and getting therapy (physical,occupational and speech). Progress is slow but steady. I am concerned about what lasting impacts this may have.

in reply to Mjcarbo

Prayers

Eltiburon profile image
Eltiburon in reply to Mjcarbo

Praying you get better.

greaterexp profile image
greaterexp in reply to Mjcarbo

What a trial you’ve been through! I’m sorry to hear this and hope you improve quickly.

bxrmom profile image
bxrmom in reply to Mjcarbo

Prayers that you get better. Glad you had people that called because they were concerned about you. Keep us updated when you can.

Jessie

TonyiaR7 profile image
TonyiaR7 in reply to Mjcarbo

Prayers for you. Take one day at a time. Patience and positive attitude.

Redskinfan1977 profile image
Redskinfan1977

Hi. Ivetried the gabapentin and it doesn't work for me. I've tried all meds and nothing works. My MS is so aggressive I hate it. I go to neurologist on March 2nd for a follow-up. Now I have this excruciating low back pain.

greaterexp profile image
greaterexp in reply to Redskinfan1977

I’ll be praying that the neurologist has some better answers for you.

Eltiburon profile image
Eltiburon

Sorry about your leg pain,hope it gets better.I had lab work yesterday,monday scheduled for mri,and getting ready for my first full dose of O.God bless.

greaterexp profile image
greaterexp in reply to Eltiburon

I hope all goes well and that you’ll let us know about your Ocrevus experience. I’m excited for you.

Juleigh21 profile image
Juleigh21

I take 600 mg at bedtime. If I forget to (like last night), my arms and legs just vibrate. At 12:30 last night I was laying in bed wondering why I felt so miserable. I knew I took my gabapentin but I got up to check. There were the two pills laying on the bathroom counter. I’d say I’m pretty much addicted to it😳

greaterexp profile image
greaterexp in reply to Juleigh21

I wish we didn’t have to take any meds, but I’m glad it helps you.

ahrogers profile image
ahrogers

I hope Gabapentin works as well for you as it does for me. I take 300mg at bedtime for vertigo but it has improved my sleep tremendously. It is prescribed three times a day but I only take it at bedtime and during the day only if I have vertigo which isn't very often.

I was going to have Mohs surgery in March to remove a basal cell from my nose but luckily the doctor thinks it is treatable with a topical ointment so get to skip that appointment.

I was going to make an appointment to see my PCP for any general labs and referral to GI for a colonoscopy but when I saw my GYN on Tuesday and he said I was up to date on labs and he could put in the referral for the GI so another appointment I don't have to do 😁

greaterexp profile image
greaterexp in reply to ahrogers

That must be a great relief not to have to have surgery! Thank goodness the gabapentin works well for you!

MSnWV profile image
MSnWV

03/12 - my 3rd full dose of Ocrevus. The only stressful part will be this is the first infusion going through the VA. Hoping all goes smoothly

greaterexp profile image
greaterexp in reply to MSnWV

Please let us know how the whole process goes.

pamgarner profile image
pamgarner

I don't have an appointment until april with my mri,I probably need to go sooner,up all night with leg spasms and leg cramps,restless legs and today total weakness! this too shall change,thank goodness everyday is different

greaterexp profile image
greaterexp in reply to pamgarner

Oh, the roller coaster! Feel better soon!

2Kiggy profile image
2Kiggy

I've been taking Gabapentin (along with Nortriptyline) for years. It is for sensory pain and seems to help with the stabbing pains in mostly my right foot, but doesn't do much with the skin sensory pain that I get from sensitivity to clothing and heat and stress. I see my Neuro in late March, but I don't suspect any medication change... frustrating.

greaterexp profile image
greaterexp in reply to 2Kiggy

What kind of change are you hoping for?

2Kiggy profile image
2Kiggy in reply to greaterexp

Well, I've taken Nortriptyline daily for 28 years, and the Gabapentin for about 3 years. I've been wanting to drop one of these two meds, as Valerian Root and Naturopathic Calming tablets seem to help with burning/tingling problems better than the meds do. It seems like taking a prescription pill daily for 28 years may be rendering it of little use. I want to get my Neuro to allow me to try dumping one of the meds.

falalalala profile image
falalalala

I hope your leg feels better!

I have a chiro appt with Dr. Handsome in a few days. He has a new partner now.

His name is Dr. Evenmorehandsome.

It's getting ridiculous!

greaterexp profile image
greaterexp in reply to falalalala

Thank you. You behave yourself in these appointments!

bxrmom profile image
bxrmom

As of right now, I have another dentist appt on the 3rd to have another tooth pulled as it is too far gone. I know there will be more in my future, just now sure when yet. And of course my chiropractor appts every 2 weeks.

Hope your pain gets better and you get some sleep.

Jessie

greaterexp profile image
greaterexp in reply to bxrmom

Thank you. Sorry about the tooth. I have a break from the constant appointments with the dentist until May.

carolek572 profile image
carolek572CommunityAmbassador

I have an annual appointment with my PCP on the 16th, and that’s it. Then, it’s Spring! Hurray! :-D

greaterexp profile image
greaterexp in reply to carolek572

Hurrah!

CrazyCatWom profile image
CrazyCatWom

I was supposed to have an appointment with my Primary Care on the 3rd, but I had a kind of crazy appointment with her a week ago, and she said I wouldn't have to come back until 6 months from the time I saw her. The appointment we did have only had her ripping on my cardiologist AND my neurologist (claiming he didn't know I have MS--even though that is his specialty within neurology). It was just a waked-out visit accomplishing nothing. I get a little break for March. Then April, I get to go see my cardiologist and pass on how PO'd my neurologist is at him for not ordering an MRI and MRA for my "thunder clap" headache I experienced in November. And let the brawl between gists begin!

greaterexp profile image
greaterexp in reply to CrazyCatWom

Oh, dear! I hope you don't get caught in the middle of all that.

CrazyCatWom profile image
CrazyCatWom in reply to greaterexp

Oh, these two departments have locked horns before, and neurology won! Fortunately this time, they are separated by the health systems they are associated with. So no blood in the hospital cafeteria, though my cardiologist used to work for the University Hospital my neurologist practices.

cljones profile image
cljones

I start Mayzent Mar. 1. So I don't see the neurologist until april, also the dentist in april. I have taken gabapentin before. The doc gave it to me for shingles. It worked great for that but the doc didn't wasn't me to stay on it.

greaterexp profile image
greaterexp in reply to cljones

Please keep us up to date on your Mayzent experience. I'm excited for you and hope this works well!

cljones profile image
cljones in reply to greaterexp

I will keep all informed.

Cutefreckles72 profile image
Cutefreckles72

I understand exactly about the leg pain. I have the same problem with my right leg. Its goes crazy at night. The next time I see my Neuro will be in June. I guess he thinks I am doing ok.

greaterexp profile image
greaterexp in reply to Cutefreckles72

Can you call tiger some help with the leg pain?

Timeflies5 profile image
Timeflies5

Love the meme! 😂 Second full dose of O mid March. 🕊🙏🏻

greaterexp profile image
greaterexp in reply to Timeflies5

Hurrah for you!

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