Floating in Limbo and now have new pains

[kat_warren]

So I am waiting for my next MRI in a week. I have had a stiff/painful neck for the last 3 weeks and I started PT. For the last few days I have had sore stiff calves and tonight I had some additional FUN! Sharp shocks in my foot.

Any thoughts?

Neurologist (getting a new one!!!) has blown off a few things such as slurred speech. He did diagnosed me with Radiologically Isolated Syndrome.

Any more thoughts?

Sigh,
Depressed and Confused in Virginia

[Redwings]

Neurological signs and symptoms don't meet the definition of radiologically isolated.

I'm sorry I don't remember all the details of your case. Until you can get in with a new neuro, is it possible for your PCP to prescribe a muscle relaxer for you? Baclofen, Flexeril, Soma, something?

Gabapentin might help with the foot shocks, but it can have side effects that are just as troubling as the pain. Lyrica might also help, but could take some time to become effective. Is your PCP up to handling that for you?

[Light68]

Floating in Limbo and now have new pains
So I am waiting for my next MRI in a week. I have had a stiff/painful neck for the last 3 weeks and I started PT. For the last few days I have had sore stiff calves and tonight I had some additional FUN! Sharp shocks in my foot.

Any thoughts?

Neurologist (getting a new one!!!) has blown off a few things such as slurred speech. He did diagnosed me with Radiologically Isolated Syndrome.

Any more thoughts?

Sigh,
Depressed and Confused in Virginia
Hi, sorry to hear you are having new symptoms, I know how scary that is.
I have just had my first MRI, last Wednesday, but my Neuro won't be back until next Tuesday and he brushed me off the moment I walked in his door, So I understand that one to.
What is it with Doctors????? I am dumb founded......
I hope you find some clear understanding from your next Neuro and MRI...

Light, Love, Laughter.....

[MinnieGirl]

I Know How You Feel

I had the worst experience with the first neurologist I saw. The appointment lasted about ten minutes.

This gentleman I saw on Friday is awesome! I was so nervous, but he put me at ease, spent about an hour with me, gave me a thorough exam, reviewed my MRIs himself, and explained everything to me and didn't make me feel stupid. He was so kind I wanted to hug him, but I didn't of course.

There are good ones out there. I don't know why I got referred to the other one first. I was told that there were no neuros close to me that take my insurance?! Maybe the PCP had some agreement with him, who knows. I am just glad that Neuro Two listened and said he would help me.

I know my search for answers isn't over, yet I feel that at last it has begun.

Find someone else. I didn't say anything bad about Neuro One to Neuro Two, who happens to know and respect him. I just told him I need to see someone close to my home and work, which is true.

Best of luck and hang in there. You know yourself better than anyone. It hurts to be disregarded like that, yet you are paying him.

Hugs,
Minnie

[Angeldifferent]

I'm glad to hear your getting a new neuro. I'm on my 2nd one and I'm not to thrilled with her. lol! grrrr
I guess I'm just sticking w/her cuz she is one of the head professors at the research ms dept at speciality hospital.

And the fact she's not trying to shove shots in me now!

This is definitly a long journey!. As far as the pains, this i have daily. Heating pad on back of neck does wonders. I walk out the pains in the feet. I began PT, so the exercises works best for me. (I have neck ones right now) starting leg ones next month. so not sure how to help ya' with what?

Good luck to you, your not alone. Oh Naproxen helps me the best too, Dr. gave me a rx of 500mg. but I take occasionaly not good on your liver. Oooh so fun, I know :{ hang in!!!!

[kat_warren]

Now I am tingling on both legs below the knees... I could just cry.

I am so grateful that this site is here. I think I found two MS specialists in driving distance so I have to make some calls tomorrow.

[nee619]

I know the feeling

Ms Warren,

I hate that there is someone else like me. I am looking for my 3rd neurologist. First two did not get it. If I find out about any neuros in VA I will let you know. It is hard to find someone who will listen. Good luck to you.

Dont give up. The folks on this site are really nice and they give you alot of encouragement. I have only been on here a couple weeks and they have helped me. Just reading some of the post and the comments shows, how they lift one another! I am glad I found this community.

[Angeldifferent]

Now I am tingling on both legs below the knees... I could just cry.

I am so grateful that this site is here. I think I found two MS specialists in driving distance so I have to make some calls tomorrow.

Kat, there are many times I have broke down and cried...I'm sure most of us have :{ Not fun.
Have you tried meditation? I self-talk myself DAILY and on my bad days (when I get flare ups that can last for hours) I go jump on my trampoline and talk to my brain and say "I may have symptoms BUT THEY DO NOT HAVE ME, I control them, they don't control me"....Sounds strange, but its a proven pych. fact self-talk does work : ) Oh yeah there is a free cd for MS Yoga, can't recall where that's at now? lol. But when I find it again, I'll let you know where it's at. HANG IN THERE Hugs

[kat_warren]

Thank you all!!! It's interesting how much more supportive you all have been over my family. I appreciate it. I called my dr on Mon morning regarding my legs and they still haven't called me back. Figures. I do have an appointment scheduled with an actual MS dr on Oct 11.

[Angeldifferent]

Thank you all!!! It's interesting how much more supportive you all have been over my family. I appreciate it. I called my dr on Mon morning regarding my legs and they still haven't called me back. Figures. I do have an appointment scheduled with an actual MS dr on Oct 11.

I'm glad your finding good support here, some of my family, boo to the supportive thang !! so i hear ya! Oh good Oct. 11th, not far out at all. Good luck and keep us posted!

[kat_warren]

Kat, there are many times I have broke down and cried...I'm sure most of us have :{ Not fun.
Have you tried meditation? I self-talk myself DAILY and on my bad days (when I get flare ups that can last for hours) I go jump on my trampoline and talk to my brain and say "I may have symptoms BUT THEY DO NOT HAVE ME, I control them, they don't control me"....Sounds strange, but its a proven pych. fact self-talk does work : ) Oh yeah there is a free cd for MS Yoga, can't recall where that's at now? lol. But when I find it again, I'll let you know where it's at. HANG IN THERE Hugs

I cried today for the first time since this happened... I am so glad that I went back and reread these posts. Everyone in my family is saying "it's NOT MS!".... well if that is the case then WHAT IS IT???? Everything is pointing towards MS, I just want to keep moving forward. It just makes everyone uncomfortable to talk about. Maybe I WANT to talk about it. I seem to notice a "pattern" where I get fatigued, calves are sore and I slur. Not necessarily in that order. Sometimes there is no warning sign so I guess I don't really know what I am saying.

Right now I have been slurring for almost two days and my legs are tingling again. My mother who lives with us said "well that right there means it isn't MS..." Really? Oh thank heavens! My underwear must be to tight then! Cutting off all the blood to my legs. Now THAT makes perfect sense!

Thanks for listening,
Queen Commando in Virginia

[FourPaws]

Family can be a real pain in the keister. You love them, but sometimes their well intended suggestions can put you in a place of misery. It's sometimes malicious, but often more misguided. They don't have the tools to understand. I've found I can talk somewhat to my husband, but I have to avoid my other family members mostly.

Also it's impossible for them to understand just how prevalent these symptoms are. It's not like the days where when you were well and just had a bit of a bug where you could simply push yourself up and through the day. If that's their only frame of reference however, that's often how they think. I've personally found it's best for me to do the majority of my venting to others that get it.

I'm seconding the Lyrica/Gaba suggestion. There are a ton of side effects, so you should read up on them. I find myself fairly spacey on them (at first it was very sleepy until I adjusted upwards to spacey) and I've gained 40 lbs that won't budge, but my nerve pain is so significant that I wouldn't have any quality of life without them. So I'll stay in less pain and fat, tyvm.

Hang in there.

[Strhuntrss]

Muscle Relaxers

Redwings

I see that you suggest Baclofen, flexeril, or soma or something as relief for muscle spasms and stiffness.

I recently have had issues with a stiff neck and legs. My back periodically goes into spasms. My PCP put me on Robaxin 750mg, I find that I can not take this for some of its side effects.

Neuro has me on the Neurontin at night for the legs. Which work for me. Im on a low dose 900mg. Baclofen is out because it may cause ovarian cysts and I already have one of those and I don't want anymore.

I am thinking of Flexeril. What is you opinion on it if you have taken it?
Thank you

[nanny4paws]

I cried today for the first time since this happened... I am so glad that I went back and reread these posts. Everyone in my family is saying "it's NOT MS!".... well if that is the case then WHAT IS IT???? Everything is pointing towards MS, I just want to keep moving forward. It just makes everyone uncomfortable to talk about. Maybe I WANT to talk about it. I seem to notice a "pattern" where I get fatigued, calves are sore and I slur. Not necessarily in that order. Sometimes there is no warning sign so I guess I don't really know what I am saying.

Right now I have been slurring for almost two days and my legs are tingling again. My mother who lives with us said "well that right there means it isn't MS..." Really? Oh thank heavens! My underwear must be to tight then! Cutting off all the blood to my legs. Now THAT makes perfect sense!

Thanks for listening,
Queen Commando in Virginia

Hi Kat!
I am in the same boat as you are, all signs point toward MS but no diagnosis yet. Aside from my mother, everyone else in my life treats me like I am faking my fatigue, tingling, tight calves, trouble swallowing, cognitive trouble etc... My fiance says, "Well, I think it's a lack of vitamins or something (like...just in my head something), but not MS." ARGHHH! I take a mitt-full of supplements besides watching my diet everyday. Like a Truck Parts Sales guy knows about MS! He won't talk about it unless I have a diagnosis...it is very frustrating, because this stuff effects me daily and is invisible to my loved ones...I look fine. If I talk about what's going on, I am complaining and for some reason this is not acceptable unless I have a diagnosis.

Like you Kat, I notice my calves tighten and trouble swallowing when I am fatigued and not always in that order and not always when fatigued.

OK... I've vented enough! You are not alone. I am very new to this site, but I think you'll find support here. I have.

Checking to see if my undies are in a bundle 'cuz my legs are feeling really weird..lol!

Sincerely,
Susan

[kat_warren]

So I am headed to the neuro finally today so he can tell me that it's all in my head and I am stressed out. OK, kidding... maybe he wont say that. Legs are still tingling and last night I accepted that I was depressed. Depressed and a little antsy today. Mother thinks she did something wrong, am I not allowed to have an off day??? I haven't "felt right" for days now. Husband keeps saying I need to be more active and that his legs hurt sometimes also. This is why I can't talk to anyone!!!! Nobody listens.

Did some gardening, and really want a nap.