Concerned

[daniconrad91]

I am looking for some advice on a couple of recent concerns of mine.

I was off Betaseron for two months while I was getting situated with my Avonex (I was also on vacation) and am starting to go into a relapse. Now, I'm not sure if I should describe it as a relapse but it's the only way I can. My fingers are beginning to go numb and between my legs as well. My vision is fine, walking is fine, it's just this numbness that's bothering me. I never get this unless I get like a UTI, the flu, a cold, or some sort of sickness.

I'm just wondering if I should call my neurologist or if there's something I can do at home to remedy it? My whole ordeal is that I have don't have any medical insurance so I rarely go to see the doctor because I just don't agree with her on a lot of stuff. See, my situation is that I recently moved from Iowa to Maryland and so I feel like a fish out of water right now since I don't know anything about this place, haha.

And this leads me to my second question. Should I seek disability? The things that keep me from doing a lot of activities are:
1. I get really light-headed, dizzy the longer I'm on my feet.
2. I have migraines all the time. They're more frequent at night. My doctor prescribed Amitriptyline but it just makes me sleep all the time. Which, isn't that an antidepressent?
3. And finally, as most of you know/have experienced, some days I just can't get out of bed.


I would really, really appreciate any advice you guys have to offer. Thanks in advance. [=
-Dani-

[JerryD]

I am curious. Do you currently have a neurologist? This is stuff you should discuss with him/her. Are you keeping track of your vitamin D levels? I bet they are lower than 50ng/mL. Are you eating/drinking dairy? Just want to know if you are trying to do anything for yourself besides the injectables.

[rdmc]

Sounds like you've got a "full plate" right now.

One thing you could do, since you said sometimes those symptoms appear when you have a UTI, is to get some strips from the drug store and test yourself to see if a UTI exists. You'll find them with the feminine products, I think they're made by AZO.

If that's the case, then you need an antibiotic, and will have to make a dr. visit probably to get antibiotics, unless your dr. takes your word for it and just prescribes them (a lot of us get flare up in symptoms with a UTI and for some reason don't seem to have the normal signs that we do have a UTI.)

Hope you can figure out what's causing the increase in symptoms. For me it can be any number of things, if it's a flare, and you don't have the insurance needed to do steroids, then all you can do is rest.

[daniconrad91]

JerryD - I am currently seeing a neurologist yes, I just don't know if I really like her. I really miss the one I had back in Iowa.

I do eat/drink a lot of dairy. As for my vitamin D, I haven't really been watching. I didn't know that could be a concern. Now that I think about it, I don't really know a whole lot about what I should be doing to keep myself afloat. My doctors never really made mention of any of that.


rdmc - I tend to get UTIs a lot, I'm not sure why, and my neurologist spoke to me vaguely about why but she didn't really answer any questions. I guess I'll look for those strips.

I am currently going through a flare. I thought maybe because my allergies were acting up but I'm not sure. I called the nurse today and she's going to call me back but otherwise I don't think I'll be going to see anyone. I may just do what you say and just rest.

[mjan]

Oh dear, sorry for what you are going through. Good to make sure if it is a UTI or not. Could you stop at an Urgent care clinic? And if it is a chronic condition, consult with a urologist. That doc may then speak to your neuro in your behalf.

Also, is this neuro a MS specialist? Why don't you like her I wonder? It is important to have a good working relationship with your neuro, if at all possible. I would consult your local MS society or find folks with MS in your area and ask them who they see for MS.

From what I learned, your Vit D and B12 levels needs to be nice and high..maintained around 70. Your primary doc can check your levels and your UTI possibility. You will be pleasantly surprised at how much better you can feel when your Vit D and B12 are at healthier levels.

Now as far as seeking disability, it is hard to obtain SSDI and it usually takes a least 1 denial. You need to show limitations and inability to work at all. Trust me, it is not a lot of money if that is your only income. And you do not even get medicare for two years following your approval.

You could apply for an intermittent family leave from your job. You get the forms from your HR dept, have your doctor and you fill out and its renewed each year. It allows you to miss work, here or there, for relapses, appts for tests, hospitalizations and not have an "occurance" used against you for missing work.

Then there is short term/long term disabilty. But again, you are at the mercy of some of the contracted insurance companies who administer this benefit.

Let us know how you are doing.

Hugs, Jan