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Old 06-30-2001, 11:06 PM   #1
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Caring HB User
Unhappy Please, I'm Trying to Figure Out What's Wrong With Me

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


 
Old 07-01-2001, 01:23 AM   #2
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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*

 
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Old 07-02-2001, 09:40 PM   #3
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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.

 
Old 07-02-2001, 11:14 PM   #4
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Caring HB User
Red face

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


 
Old 07-03-2001, 03:37 PM   #5
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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!

 
Old 08-26-2003, 12:09 PM   #6
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I am looking for an excellent rheumatologist in the Atlanta area and wondered if you would share the name of yours with me?

Quote:
Originally posted by meflynn:
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!

 
Old 06-29-2004, 02:21 PM   #7
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SHERRIE TUCKER HB User
Re: Please, I'm Trying to Figure Out What's Wrong With Me

Hi My Name Is Sherrie....yep Thats Me. Terrible Muscle Pains Achey All The Time. Yes I Do Get Red & Hot ...only My Face & Feet Though. What Kind Of Tests Have You Had?

 
Old 06-29-2004, 05:53 PM   #8
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Tumbled HB User
Re: Please, I'm Trying to Figure Out What's Wrong With Me

Hi all, I have just posted on another topic, but I think you should research Autonomic disorders; like Multiple system atrophy or Autonomic dysfunction. I was just dx with autonomic dysreflexia and one of the symptoms is skin turning red. It has many of the same symptoms of MS, which I also have, but you should look at some sites. Hope this helps.

 
Old 07-03-2004, 08:15 PM   #9
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Re: Please, I'm Trying to Figure Out What's Wrong With Me

Quote:
Originally Posted by jibra
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*
Jibra! Welcome to the Healthboards and thank you for sharing such great information!

 
Old 07-03-2004, 08:25 PM   #10
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Re: Please, I'm Trying to Figure Out What's Wrong With Me

Hi All!

All of your stories are interesting and thanks for sharing. Hope all gets the answers they need. Meflynn--Hope you have a pleasant summer with your children!

I wanted to let Caring know what I've learned about tremors and the jerking she has been experiencing. The neurologist will have the brain and cervical area scanned (MRI) to check for lesions particularly on the cerebellum. If there are lesions or damage, the cerebellum is the culprit for the tremors. Also, the neuro will look for lesions on the cervical spine.

Tremors can be caused by many triggers. Medication is one. So check out the medications you're on with your pharmacist and discuss this with your doctor is you find one of the meds can cause tremors.

With regards to breathing problems and the heart questions, have you had an EKG done? It is a simple test and inexpensive that can be done by the GP. Also, breathing problems can be caused by autoimmune conditions such as Wegener's granulo..... and/or Sarcoid. Wegener's is a type of vasculitis (so is lupus). It is a serious condition and if you've had the flu like symptoms that just won't go away, that is a symptom. An ANCA test may be in store for you--talk to the rheumatologist. Not trying to scare you or dx you, but just giving you more information to research. Good luck!

Hugs to All!

Last edited by californiasunflower; 07-03-2004 at 08:33 PM. Reason: I forgot to mention about the heart/breathing question

 
Old 07-10-2004, 06:59 AM   #11
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Please, I'm Trying to Figure Out What's Wrong With Me

Caring, you may want to consider Lyme disease as a possibility. Lyme is a bacterial infection caused from the bite of an infected tick. It is the second fastest growing infectious disease after AIDS in the US, yet little is being done to educate the public and medical community of its seriousness and prevalence. Many people are bitten by a tick without knowing it. Besides Lyme, ticks can transmit several co-infections. They can cause a multitude of symptoms including the ones you describe.

One of the tickborne co-infections is Babesiosis. Dizziness and shortness are breath are two of its major symptoms. For more information on Lyme disease, read the "Lyme Disease Information" post on the Lyme board at this site.

When tickborne illnesses are a possibility, it is very important to see a knowledgeable doctor. There are not many. If you would like to pursue this possibility and would like a doctor recommendation for your area, just let me know where you live.

Don't give up. You will find answers.

 
Old 06-03-2010, 04:56 AM   #12
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Alice41 HB User
Re: Please, I'm Trying to Figure Out What's Wrong With Me

Concerning the redness of your face, hands and feet. I haven't seen anyone mention erythromelalgia on this thread! It can be:

1. Primary (genetic)
2. Caused by certain autoimmune diseases
3. Associated with Fabry's disease, or at least very similar (also genetic)
4. Associated with small fiber neuropathy of any cause
5. Can go along with high cholesterol

Attacks are triggered by heat, pressure, mild activity, exertion, insomnia, and stress.

Contrary to what someone else posted, erythromelalgia CAN sometimes go along with multiple sclerosis. Do a Google images search and you'll see pictures of it. It particularly affects the soles of the feet and palmar aspect of the hands, but can also affect other areas.

 
Old 06-03-2010, 05:01 AM   #13
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Re: Please, I'm Trying to Figure Out What's Wrong With Me

Alice,
you responded to a thread which is over 6 years old. I dont think anyone is looking for an answer any longer.
However, I found several threads with erythromelalgia listed, which are much newer if you need to talk about it....or start a new post!
Nikki
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RRMS- dx 05

 
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