Please, I'm Trying to Figure Out What's Wrong With Me - Multiple Sclerosis Message Board

Caring · 07-01-2001, 12:06 AM

I've been reading websites and bulletin boards about anything that comes close to what I've been suffering. So far it's narrowed down to Lupus, MS, Parkinson's, and Fibromyalgia.

I have some questions for you. Does anyone here have episodes where their hands, feet and face turn bright red and hot like a sunburn? Also, do you suffer from terrible joint and muscle pains?

And when a neurologist looks at an MRI of your brain, what exactly is it that determines you have MS? Is it a lesion on the brain or on the spinal cord where the brain meets your spine?

Any inforamtion you have would be most helpful. Thank you.
Sincerely,
Caring

jibra · 07-01-2001, 02:23 AM

HI:

Ms symptoms dont cause your skin to turn red.. you experience a burning synsation but your skin doesnt change color.

The muscle pain feels like you pulled a muscle in different areas (like your whole arm) and the pain lasts for days, like a deep toothace in a limb.

Ms does not involve the joints unless muscle spasms, contractures, and severe spacisity have pulled the muscles tight AROUND the joint.

You might want to continue looking into the possibility of FM. or Reum. Arth. Or even testing for Lupas or lymes disease.

Good luck....jj*

meflynn · 07-02-2001, 10:40 PM

Caring - I just met you on the Lupus board! You seem to be in my position - with a mix of symptomology. I've been diagnosed with UCTD - Undifferentiated Connective Tissue Disorder. I have symptoms of Lupus - but also some that match MS. When I first saw the Rheumatologist I see now, I had beet red palms and soles, wandering joint pains, fever, fatigue and sore in my nose and mouth... the red palms and soles -I was told - is a vascular problem stemming from autoimmune illness. Around this same time, I had some numbness in my left fingers and tingling in my left leg. I thought I'd had a stroke. I had an MRI and it was clear. I also saw an Optho-Neurologist who said some of the visual symptoms I was having (flashing lights in my vision and transient blind spots) were related to Opthalmic Migraine. I've only had one episode of this hand and leg tingling - but to this day, I wonder it it's MS - or maybe a peripheral nervous system symptom of Lupus?? My Rheumatologist isn't sure - but he does verify I am sick with some type of autoimmune illness. My Lupus profiles are usually negative or borderline positive. I see the Rheumatologist as needed -when I'm symptomatic. I recently had an odd flare - where my jaw/teeth/gums/left side of face were extremely painful. A few years ago this happened and I rushed to the Dentist and ended up having a horrible (and unneccessary)gum scraping treatment. What I know now is that this symptom is a flare in a main facial nerve. MS patients sometimes have this - it's called trimenigal neuralgia. It really hurts!!I saw my Rheumatologist last week who put me on a one week steroid dose-pack. This could be an MS or a Lupus thing...I am tired of the not knowing and of having such a nebulous diagnosis...I hope you figure out what is going on with you and that you will be well.

Caring · 07-03-2001, 12:14 AM

Oh wow meflynn, this is too weird. My hands and feet are beet red too, as if I've been walking on hot concrete every day, and rope climbing (neither of which I've been doing) and they hurt, even between the joints. Feet and hands are HOT to the touch most of the time now, and even when they are cold, they are still red and sweaty. Do your hands and feet sweat for no apparent reason?

Please let me know what your doctor says, because it sounds like we have the same thing. Do you get ill spells, where you just suddenly feel dizzy and nauseated, with an all over feeling of ill health, sometimes followed by sweating? Mine last between 10 minutes to 2 hours (though rarely for as long as 2 hours.)

Do you feel dizzy/tipsy all the time? And also extremely fatigued.

Terrible joint and muscle pains all over, but particularly between the joints of your fingers and toes deep into the hands and feet?

Have you had any tremors, like at night when trying to sleep, back spasms or arm flapping?

He he he, my list goes on and on. We should exchange our lists of symptoms, and between all of our doctors, maybe you and I can figure out what is going on here. I'm trying to get in to see a Rheumatologist. When I get back from vacation I will check if my referral has been put in.

The tooth thing, I've been having pains in my mouth too, though I do not see any obvious causes, and am in too much pain, and my immune system is too weak right now to have somebody do any unnecessary things to my body--afraid I will go into total immune shutdown.

Do you feel there is a strain on your heart from all the pain and illness? Also, do you feel like you have a cold AND a flu every day? Breathing problems too? These are some of my symptoms.

Looks like we both have the doctors stumped, and we likely have AT LEAST TWO things going on. I've not yet found just one Disorder that fits all my symptoms, as I am sure is your case.

We definitely have to exchange information here. Hope to see another response from you soon! And hope you are feeling better!
Sincerely,
Caring

meflynn · 07-03-2001, 04:37 PM

Caring - My diagnosis has been UCTD - I think it's the same as MCTD - a mix of autoimmune disorders with no clear picture of just one disorder. I recently went over two years symptom free! Then, this summer - I've been with my little boys at the pool a lot and have been teaching a class at the University - and I've had a flare. It started with me being tired all the time - 10 to 12 hours of sleep doesn't help me feel rested when I'm like this. Then I got the severe jaw/teeth/facial pains, pain in my left index finger middle joint, and fevers. I went on a Medrol (steroid) dose pack and feel better - just tired still. I've also experience little electric-like shocks on my body. Very bizarre. If it wasn't for the joint pains and fevers, I'd really think I have MS. The joint pains and fevers make me think it's more Lupus-related. I can go long periods of time with no symptoms, so I guess I'm lucky that way. I am going to my Rheumatologist Thursday to check in. I have an excellent Rheumatologist - if you are in the Atlanta area. Try to get in to see one ASAP - so you can get a better idea what is going on. My Rheumatologist is the first one to realize I was really sick - and NOT a stressed out new Mother. My sed. rate is almost always elevated which means there is inflammation somewhere in my body. I'm not on steroids much - thank God - but just take them when I need to. I take Celebrex when needed, and this helps. Wellbutrin - 100 mg's. in the am has helped me a lot with energy and weight loss. Hope you and all on the board had a good day!