New "Severe" SX for "Possible MSer"...Please help
 

I will try to get through this as simple and as quickly as I can. I started having sx's of MS about 5 years ago. Trembling, myoclonic jerks, vision problems, sleep problems, bowel/bladder issues, total FATIGUE, choking when eating and or drinking sometimes, etc. The list goes on.

Saw a MS specialist at Duke University Med Hospital for almost a year. He did brain MRI's EMG's (not sure what those are and I never got the results of mine). All I know is that it hurt like H-E-double hockey sticks.

I have never gotten much better. I have conformed to my illness I would say. I can get about an hour or two of things done in one day, before I am totally exhausted that I can move my arms, legs or even neck. Then I also have my bad days, where all I can do is stay in bed and I do sleep. I know many people say fatigue with MS is different than being tired. I understand that, but my mind is so mentally fatigue that it can't concentrate on anything but sleep.

Up to date, I have been dx with Fibro/CFS, NES (psychogenic) severe IBS and other things. However since Wednesday past, I have had the hardest time. It began with my hips. They were truly wicked sore. It felt like some one took a ball bat to them and broke the bones. It didn't stop there. I also "felt" like I had a huge know between my two shoulder blades right on my spine. Sooooo painful.

Called both rheumy and PCP, both couldn't figure it out and gave me pain meds. Whoo-hoo. Just on the 29th of March I was in the ER for the same hip problems - they too gave me meds with codeine to help me sleep. I AM SO TIRED OF PLAYING THE MEDICINE GAME-HOW DO I GET TO THE DIAGNOSTIC CENTER?

So continuing with Thursday - Today. I have not been able to do much. I can't sit, I can't stand, I can barely lay, but not on my hips or back. I think what scares me the most is that since Wednesday (and yes this has occurred before) my legs and arms shake (tremble, don't know the difference)like my body is having an earthquake, no matter what position I am in. Yesterday taking a shower, my legs shook like a leaf on tree and I couldn't seem to stand on my own to feet (but it isn't b/c of love that I am all shook up...lol). My hands are doing the same thing when typing, pouring a glass of drink, folding laundry - basically whatever the task is I am shaking very hard.

Called rheumy he says "it doesn't sound like anything I would deal with. Definitely not part of Fibro, you might want to call your PCP". Sure I will go with that. I call my PCP, "Sorry ma'am he is out of the office until next Monday, is there someone else who can help you"? Not really, b/c he is the only one that has ever seen me and I don't need more meds...

So my last brain MRI was August 06, never had a spinal MRI, should I call my neuro and get in with him? Does anyone have similar issues, any idea's.
HELP to infinity and beyond...

M

P.S. I have been taking B-12 5000mcg since '04. It doesn't seem to be doing anything for me. I also take multivitamin, B-6 and complex B. I am at a lost of what to do next. BTW, I haven't worked since November of -03. I had a complete hysterectomy in June of that year, which I suspect brought the beast to life.

I am so sorry for your pain, M. :( I take it from your post that you have not been dx with MS, as of yet?

I don't have any answers for you, but just wanted to welcome you and let you know that, someone is here who cares.

:hug:

Wow, hurt, your list sure is long and nasty. :( I do think you should call the neuro. Most of the time it helps them assess your situation when they have more of the symptoms to compare. I'm not a big believer in all the major medical campus systems like Mayo, etc. They seem to warehouse and herd patients. I vote yes on proposal neuro. I hope you'll find some answers soon. :)

I agree that you should call the Neuro. Sorry you are in such pain. But, I will have to tell you that my hips hurt so much at times, that I cannot even stay in bed and I also have FM.

Hope you can get some relief. take care and let us know how your'e doing. :grouphug:

:hug: Sorry to hear about all the things going on. I agree with calling the neuro. I hope they get to the bottom of this for you soon.

Hi:

Sorry you are having such a terrible time of it.

Forgive me if I am wrong but all the physicians seem to be doing is giving you pain meds. If you are that shaky why are they not testing - they can obviously see you are in distress.

Maybe a new doctor might have fresh eyes. Your quality of life is non-existent, it's horrible.

call me crazy...
 

Thank you for understanding. That is exactly how I feel -non existent. They did a lot of test in 04 thru August 06. But what I have read, many things can take several years to show on MRI's and so forth. So why they aren't testing now, I am not sure. I would definitely like the answer.

I called my neuro's office and they said that they now require your PCP to call in and set up an oppointment. No more self-referrals in other words. Well my PCP is out until next Monday, so I will just keep journaling as much as possible.

Also one thing I forgot to mention (and this happened in '04 also) is that I am seeing double vision. My right eye literally burns and I can only read if I close that eye and read with my left one and then it still isn't totally clear.

Does that ring a bell to anyone or make any sense. Thanks to all who have replied, but I could sure use some more help on this.

M :thud:

Please please get a second opinion. Time for another MRI it sounds like, and make sure they do the spine. Some ppl only get lesions in the spine, and that could explain some of your s/s. Also, have you had an LP? Go to a neuro, or to a diff MS specialist. He doesn't sound much of a specialist, my general neuro did more testing on me than you got from your specialist.

The EMG, if anything was wrong with that, it would show more of a muscular/nerve problem rather than a neuro problem. Make sure you get those results along with EVERYTHING else and take to a new doc. Actually, when you make the appt, fax everything to them so s/he has time to review it, and more time during the actual appt to talk to you and order whatever you need. Please be your on advocate. Push for answers. Take nothing than the best, and ALWAYS get results to your tests. Educate yourself on what the tests are being done for, so you have your own arsenal of ammunition. That way you can MAKE them take you serious.

Good luck. I hope someone tells you what you need to hear soon, so you can get to the living and management phase of whatever is wrong!

:hug:
Connie

If you have seen him before, you still need a referral? Is there anyone at the office to give you a referral? Can you call your Ins for a referral on your own? Take this time to list ALL your symptoms and time frams from the beginning to the best you can recall. Call and get copies of EVERYTHING you can. Call some ueros offices and see if the specialize in auto immune disorders, specifically MS. Find a good one that seems to fit your needs. Don't go back to the one who has not given you answers!! Look over everything you have, do loads of research in the next week. ARM yourself with info and questions to ask... You can never ask to many questions or do to much research!

:hug:
Connie

ETA all the dxs you have in your siggy could be explained by MS. Please don't give up on this. I always tell my patients BE YOUR OWN ADVOCATE. If you don't advocate for yourself, no one else will. You need to get to knowing and managing so you can LIVE!!!!!