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Still learning about this disease

PostPosted: Sun Apr 27, 2008 4:03 pm
by Nenu
So today, I woke up, felt pretty good. 3pm, I get this burning in both sides of my face, under my eyes to my top row of gums. It's so bad, I consider going to the hospital (was making my eyes burn, and I had no fever).

By 5pm it was beginning to go away. 6 pm, gone. 8 pm... coming back.

Is this honestly what MS can do?? I have not began my DMD yet... still waiting on financial assistance approval.

Re: Still learning about this disease

PostPosted: Sun Apr 27, 2008 6:28 pm
by NHE
Hi Nenu,
I've never had burning sensations in my face, but I have had burning sensations in my leg. These can come and go and are worse when I'm over stressed or over tired. They tend to feel like having hot sand paper stuck to my leg. One thing to note though, is that just because we have MS and can have peculiar symptoms at times, doesn't mean we are immune from other health problems. If a symptom is bothersome for you, then you may want to get it checked out by your doctor.


PostPosted: Sun Apr 27, 2008 7:56 pm
by jimmylegs
hey, found this interesting post on another forum:
Hi, I have been frantically searching every msg. board on the internet hoping to find an answer. I also have tinnitus which started almost 2 months ago and has gone on non stop since. My other symptoms started as burning and tingling in my handsand feet then it progressed to my whole body. Right before the tinnitus started, my face and head started going numb and now and then my right arm does too. I have been going round and round with several doctors. They have done lots of testing, they started off saying they thought it was MS. They did lots of different blood
work, on Thursday evening a Neurologist from Ohio State University Hospital called and said that she thinks that she may have found my problem. My Iron levels and Ferritin levels are EXTREMELY low and also my B-12 level is at 272. Which is withing range (200-900)but she said that when a person has neurological symptoms and their levels are below 400 she treats them with B-12 shots, she said that the vitamin pills do not take care of the problem. She is doing a prescription for me and on Monday I will be starting them everyday for the first 2 weeks and then depending on how the levels go up they will decide the next course of treatment. I have been told by several different people on here that a B-12 problem can cause all types of terrible symptoms so I am praying this will work for me.

As for you...maybe since your levels are below 400 this could be some of your problem if not all. I know it sounds like to easy of a cure but I guess you we won't know til we try. All I know is to tell you to keep trying, keep pushing because a lot of doctor think it is easier to try and mask the symptoms by prescribing Xanax and that type thing instead of getting to the bottom of it. Three doctors that I went to insisted that it was all in my head, it was nerves, anxiety and I just shook my head and told them in no uncertain terms that it was not and that I was NOT taking those meds. Just as you said I am not a nervous stressed person and I just refused to be put off. I felt bad sometimes that I might have came off as a pain in the butt but hey no one is going to help us but US!!! Keep at it! My prayers are with you!!

PostPosted: Mon Apr 28, 2008 3:32 pm
by Nenu
Interesting.. a lot of different answers/scenarios there. I'm going to try and hold out for my doctor apt on May 5th, and see what she has to say about this. Perhaps she can try neurotin (sp?) with me (or a similar drug) and see if that eases the pain, which I do suspect is not infection related (I had extensive blood work completed just a couple months ago during my MS dx) and likely PN if anything.

My one concern however is, I thought that PN only affected 1 side usually? This is affecting both, however the activity is heavily weighted on the right side v the left.

PostPosted: Tue Apr 29, 2008 9:36 am
by Nenu
Well, I went to the clinic today, because my ear on the right was still very sore, as well as my neck. I have an infection in my ear canal, so now I have drops to try and clear up this mess. Doctor said the face flushing I was feeling could very well have been related to the ear infection. Let's hope!

PostPosted: Tue Apr 29, 2008 1:18 pm
by jimmylegs
this is a stupid question nenu but are u taking any supplements right now? any potential suspects for transient reddening and pain?

PostPosted: Tue Apr 29, 2008 1:23 pm
by jimmylegs
also i know my mom has read something about unilateral symptoms and biochem, i can't remember i'll ask her what she said - i think it was in some book that talked a fair bit about sodium and potassium balancing.. will get back to u on this. pester me if i forget - if you are interested ;)

PostPosted: Tue Apr 29, 2008 2:16 pm
by Nenu
Well the ear's been bugging me for a long time. I was sent to an ENT, which lead to MRI I requested. Which lead to my MS diagnosis. So it's not a new thing, but yes I take several vitamins etc now, which I detailed in a post on the regimine board.

PostPosted: Tue Apr 29, 2008 5:22 pm
by Nenu
Oh, the face flushing isn't perhaps the best description. No redness that I could tell, just a heat wave that would come and go for an hour or 2 at a time.

PostPosted: Tue Apr 29, 2008 7:45 pm
by jimmylegs
oh okay. for what i was thinkin there, u would def have noticed red flush! i'll still ask mom about that unilateral something she had read though :)

PostPosted: Wed Apr 30, 2008 11:01 am
by Nenu
I can say one thing...

After 1.5 days of the ear drops (prescription) to take care of the infection, my whole right side of my face/neck and the jaw is insanely sore. Jaw is so sore it hurts to eat. :(

PostPosted: Wed Apr 30, 2008 1:15 pm
by jimmylegs
owwww nasty!

PostPosted: Wed Apr 30, 2008 4:05 pm
by Nenu
jimmylegs wrote:owwww nasty!

Yeah, this is NOT pretty! ;)