when is it enough? (a probably too long post)

[lynnepynne]

Hi everybody!
Again, a call for all of you current or former Limbo-landers:
I am getting to the end of my rope physically and I am having such a hard time dealing with not being able to have any treatment for my "mystery disease" until I have a diagnosis!

I just seem to be getting worse and worse and my doctors are just shrugging shoulders and looking pensive.

I am in the care of a PCP a neurologist and rheumatologist. The rheumy is busting her chops for me (for which I am really grateful) but she keeps coming up empty handed.
Since my brain MRI (with and w/o contrast) and my c-spine mri (w/o only) are clean and the lumbar too everybody's in a quandary.

Meantime I feel like I am stuck in a never-ending Flare of Crappy-ness and medically speaking: nothing is happening. Nada.

Currently I am losing more and more ability to walk, (due to muscle weakness, balance issues and some spasticity) my right arm and foot have transitioned out of the reduced sensitivity/pin & needles numbness pain crap into a completely numb phase and sometimes I cant *gulp* pee properly. (this is also just mentioning the big stuff, I dont even wanna start on about all the bits and pieces of the little everyday annoyances, but I'm sure you all can imagine)

This whole thing has been going on since the middle of May and since I dont dare to hope for an answer to the big questions, apparently I dont get to any helpful meds or support either. My PCP is lovely but wants the specialists to take care of things, my rheumy is testing and testing and testing and the neurologist wants to "see how things unfold"

But things are unfolding and IT IS NOT FUN.

*for background: I have been in rheumatological treatment for the past 4 years for a rheumatic condition (severe joint pain, in flares) I now, apparently, never had. (according to my new rheumy)

Last year I developed the first obvious neurological symptoms which I dismissed (trouble walking and some slurred speech). A few curious experiences this past winter got my attention (hot patches on my skin, buzzing in my legs and balance issues) and then things got serious in May: I couldnt walk very well for a couple of days and then following the subsequent LP I suffered from strong spasticity and mind blowingly painful spasms in my and all kinds of other scary stuff.

I have been all over the place health-wise since then. I keep getting new symptoms.*

I guess what I want is some sort of treatment to help me move out of this. While I was being treated for the joint pain at least I received oral steroids. The dose was low and I really felt like if they had been higher I really could've have kicked the flare, but my dr. was very conservative and didnt want to up the dose too much.

I could really notice it sped up recovery time though, and I really could do with some of that now....as it stands I am not even getting baclofen for spasticity or at least a free kitten for being strong

What do I have to do to get treatment?!?!
(so I can stop whining?!)

[rdmc]

You may need to changendoctors, either your neuro, or if you could find a GP to treat symptoms that would work.

I was in limbo land for a couple years, and it was bearable because I had symptomatic meds. I mean the truth is a DMD is only going to slow progression a little ( I think the stats are 30 percent fewer exacerbations ) and steroids do not effect the course of the disease in the long run. But what will help you be more patient in the meantime is some relief from your symptoms

Sensory symptoms can be helped by neurontin, or something like it; spasticity by baclofen or zanaflex; There are drugs for urinary symptoms (a urologist might help you there.). I was
on zanafex and neurontin for a year before I was diagnosed.

I'd seriously consider looking for another doc or having a heart to heart with your present docs about meds to help with your symptoms

[Shashi]

(((((((lynnepynne))))))) I'm so sorry you're dealing with this!! Being in limbo can be extremely frustrating, especially when you feel horrible and you know something is wrong, but no one can figure out what it is.

Have your doctors checked for some of the many other MS mimics, such as Sjogren's syndrome, lupus, Vitamin D or B deficiencies, Lyme disease, etc.? If it is MS, sometimes it can take years for the lesions to show up. (I've been in limbo for five years and it was just last year that lesions started making an appearance, and last month that I was diagnosed with ON. And even then, the lesions are non-specific and in the wrong places. Talk about frustrating!)

Are you getting any treatment for your symptoms? Even if you don't have a diagnosis and can't get DMDs, you shouldn't have to suffer with symptoms. Things such as gabapentin can help with the nerve pain and numbness, baclofen can help with any muscle spasms you might have, there are a lot of treatments for fatigue (such as the two anti-oxidants that are in my signature), etc. Talk to your doctors to see if you can get something to help you be more comfortable.

And hang in there. You're not alone.

Hugs and prayers,

Lisa

[Lexie]

Hang in there girl. It took me 7 months to get a diagonois. Guess that is why I was not so upset when I received it because I was so tired and no one could give me an answer. Went to the ER and spent three days in the hospital doing more tests than I could ever imagine. Even after that it took 7 months before my neuro would diagonose. The visit took 5 minutes after waiting 2 and a half hours in a patient room. He gave me very little information, put me on copaxone and told me to go to the MS Society on the web for answers. Blessings that I found the wonderful people here. Keep in touch

[Temagami]

Please try the dietary measures as it IS something you DO have control over. You have nothing to lose. Think of it as an experiment with an n=1.

[lynnepynne]

thanks everyone!

sometimes I feel like such a wimp because most here are dealing with such yuckiness and more on a grander scale. (plus it is not even clear WHAT I have)
It makes it so much easier to deal with just reading around the message boards and when I DO post I get such heartfelt and helpful responses.
You wonderful folks at MSWorld are keeping me a sane person at the moment, THANK EACH OF YOU SO MUCH FOR THAT!

First Lisa: thank you for the hugs. You have been out there in Limbo so long and things are so crapola for you right now especially. I am amazed you find the strength to take care of other limbolanders so much. It means so much.

To answer your questions: yes, I have been tested for everything. I have given more blood to be tested in the past 2 months than I donated in the last 5 years! lol! I specifically asked for the b12 and thyroid stuff and Lyme etc has been tested regularly for the past 4 years. Nothing is coming up (a HLB5 (?) marker has come up, but clinically not really interesting as I dont have those symptoms. It is the marker for Morbus Behcet)

The rheumy is now focusing on more genetic tests (to look for a genetic diseases like Fabrys disease) and I have been ordered a consultation with genetic disease specialists. Seems kinda far out there, but anybody who is digging with such gusto into finding an explanation for me is on my team as far as I am concerned.

rdmc, it IS time to have a heart to heart with my pcp. I think he is a good listener and a good general doctor. If I tell him specifically what I need maybe he can help.

I also have an appointment with an MS specialist on Sept 7th. I feel kinda worn out and not in the mood to be dismissed by yet another doctor. BUT he has great references from a friend who was undiagnosed for years and years (they saw lesions only after 20 yrs!!! Hows that for mega terrible?) and she says he is very knowledgeable and experienced. One cant stop hoping can one?

Temagami, I know! I know! I dont know why dietary issues are so hard for me to "fess up" to. Taking supplements (like some Lisa suggests) seem just so much more doable. Changing my diet is just so daunting. If you want to hear the "whine" I guess I could tell you I have 3 kids to shop and cook for on my own and I am so exhausted just getting healthy meals for them on the table. Oft I am too tired to even eat much myself! I am not really underweight but it is a struggle to eat enough (especially at work). The idea of making a major dietary change just overwhelms me. I know folks rave about it, but I worry its yet another thing I'll have "to manage".
Lexie:

The visit took 5 minutes after waiting 2 and a half hours in a patient room.

Yeah, nice one.

[lynnepynne]

"mini strokes"...
interesting idea. I will bring it up with my neuro. Thanks!