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lupus fibromyalgia and ms


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Old 05-28-2005, 07:30 AM   #1
judy1967
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lupus fibromyalgia and ms

I Just Feel Something Is Not Being Found Here. A Family Of 4 Girls And My Mom. Mom Has Lupus, One Sister Has Lupis, One Sister Has Multiple Sclorosis And Two Of Us Have Been Diagnosed W/ Fibromyalgia...i Want Answers..i've Been Through Hell, Going Through Hell, Have All The Symptoms Of Ms But No Lesions (ms) No Lymes (have Had A Tick In My Temple In Va And One In My Spine) I Wake Up And Can't Walk Can't Climb Steps..legs Hurt Go Numb And Tingle Often I Don't Complain I Just Deal With It But Today I've Just Had Enough Tired Of Questioning What Is Wrong With Me And To Top It Off Now They Found Nodules In My Throat And Want To Do A Biopsy..i'm 37 Yrs Old My Question Is
I Have Symptoms Of Everything Here These Fibromyalgia Tenderpoints Are Crap That's What They Say I Have My Knees Dont Bother Me To Touch These Points Dont Bother Me My Neck Is Always Stiff My Back Constantly Hurts My Shoulder Sometimes Wont Move I Have Bouts Of Weeks Sometimes Months That I Just Ache I Wake Up Tremoring I Shake Going Down Steps What The Heck Is Wrong!

 
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Old 05-28-2005, 11:07 AM   #2
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Re: lupus fibromyalgia and ms

Judy1967,

If anyone knows what your going through itís me. I am 41 and some in my family were being diagnosed on and off again with possible multiple auto-immunes diseases with both false + and Ė blood work even. Then something happens to me that I wonít go into now because itís a long story now. I was diagnosed with a rare orphan disease called Systemic Mastocytosis. My studies of this disease are showing that it may not be as rare as once
believed. They believe many people go on un or mis diagnosed and are being treated for other things. I wonít go on about all of them but the largest category would be auto immuneís diseases. Rheumatoid arthritis, Sjogrens, Crohnís, Lupus, Thyroid, even Lymes is considered an autoimmune disease. If you read of the roll Mass cells play in even normal people you know why. HEALING. Even when someone cuts themselves, the mass cells show up there and bring along both the immunes system and histamines to help fight infection or whatever and heal us. After all is good they break it up and leave the cut or wherever. Now people with Masto have too many cells. When they are triggered by whatever they attack YOU because there is nothing or infection from a cut to attack. Mimicís auto immunes diseases so yes there are false + and Ė readings on tests that I have read about at times. Some people have different variants or triggers. Some even have more aggressive forms of the disease.

Here is an example. Crohnís disease is an auto immuneís disease that attacks the stomach and intestines. Some masto patients may be treated for ulcers for years with a Band-Aid med for peptic ulcers. Years later they do further tests with cameras and find somethingís been nipping away at the intestines too that resembles Crohnís so they treat them for that. This sometimes happens because even if Drís even heard of masto before they disbelieve the odds it would be this. In the meantime this could be doing damage to other things too. Not just your digestive track. I believe myself that if someone would spend money on research of this disease that most docís never heard of they might find a better way to treat ALL auto immuneís diseases. They are obviously connected to each other but they know hardly ANYTHING about this. Not enough people get diagnosed so no money is spent on research. There is research millions for studies like how beetles mate or something stupid though.

I personally have all the symptoms you have now and went through 2 years of pain and agony doing more damage with severe bone loss because docs gave up or treated me as a Hypochondriac. It took me shrinking 4 Ĺ inches in 2 years from ten broken vertebrae to convince them I was not faking it because my blood work was normal. You may need more help new docs or more tests.

God Bless and good luck to you and your family.

John

P.S. I am not saying you have this by the way so don't misunderstand me. It might be worth looking into though.

Last edited by Johnster; 05-28-2005 at 11:12 AM.

 
Old 05-28-2005, 06:39 PM   #3
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Re: lupus fibromyalgia and ms

thanks john for the information ..it is interesting. I was told that my cells are attacking my own thyroid and treating it as if it were foreign. My thyroid has been over active for so long that now it is dying out ...37 now and I specifically remember them talking to my mom about my thyroid at age 12..now the part i don't understand...why wait till i'm 37 to do anything..now i have these nodules..I also have c.o.p.d. and fibromyalgia i've been told.."we have a psyciatrict right at the clinic..and they all want to put me on antidepressants which is totally ridiculous...i'm not depressed....i'm frustrated trying to tell them SOMETHING IS WRONG.. and then listen to them say we don't see anything on your tests...the list of symptoms i put in here is just brief..the electric shock pains are getting more frequent, the weakness in my right side is just scarey when standing and my leg is so weak it just starts shaking ..i'm constantly tripping and running into things . dropping things..and that kills me..when people don't know and say "oh you've got the dropsies" i smile and say "i guess" knowing i dropped it cuz half the time i don't grip anything they also said i have rheumatiod arthritis...i just can't take these diagnosis' i'm too young there's something here and it's effected my whole family in some similar way..i'll continue to research

 
Old 05-29-2005, 03:57 PM   #4
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Exclamation Re: lupus fibromyalgia and ms

Dear Judy1967, did they check your ANA? It seems to me you have lupus.
You are always weak, you drop things (because you don't have the power to hold them them, difficult to walk, electric shock feelings. It's all lupus.
A lot of people with lupus have fibromyaglia also.
If you don't have tender points then you don't have fibromyaglia.
You might have lupus now and in the future fibromyaglia.
Let us know what your ANA was.

Last edited by Iwantacure; 05-29-2005 at 03:58 PM.

 
Old 05-31-2005, 05:43 AM   #5
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Re: lupus fibromyalgia and ms

not sure what ANA IS?

 
Old 05-31-2005, 06:32 AM   #6
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Re: lupus fibromyalgia and ms

Judy,

I have had all those M.S. type symptoms too. It isnít M.S. for me though. I have a series of pinched nerves from all the back and neck problems associated with my disease. As a result it can cause that. My disease itself can also cause that for a number of reasons.

I think they are saying if there is something attacking you this seems like an auto-immunes disease is suspected. I believe that thyroid diseases are considered auto-immunes diseases. I personally know a lot of people with thyroid disorders. Some older people used to have them removed years ago. Today they try to medicate some with drugs like Synthroid. These are for people with hyper and hypo. Iím not too sure whatís up with yours. I think the reason they are suggesting anti depressants is the low sides can be bad. Woman especially because of itís effect on hormones can mood swing so rapid and extreme. Also included with this can be heart palpitations, anxiety, or weight gain or loss, ectÖ Bottom line I think someone at the docís office needs to do a better job finding or explaining exactly whatís wrong with you and the names for it. With all that is happening to you including the numbness on one side I wonder if it may not be a good idea for you to also monitor your blood pressure threw out the day too.

Anyway if I can be of any help let me know. Good luck and God Bless

John

Last edited by Johnster; 05-31-2005 at 06:34 AM.

 
Old 09-12-2008, 01:54 AM   #7
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Re: lupus fibromyalgia and ms

Wow, its been a while since I last wrote. I've made a little progress. I've seen several doctors since, nerologists, endo's, family physicians, ect. Have had several MRI's. and blood tests over and over. Recently, within the past yr or two, I've been diagnosed as having hashimoto's, anemia and started having bronchial spasms..lets just add to the "crap" i've been going through. Now mind you, i've been seeing the doctors for achey legs mainly climbing stairs or going uphill, and a shoulder problem that has gotten to the point that i can barely lift my arm. several mri's showed nothing, and now 20 some yrs later, I have two small lesions on a brain mri, and extra bone growth on the back of my neck. more mri's of lower lumbar, and more blood tests, and now after being tested several times before, I have a Positive lymes test. I am not sure what to think. Since I have written before, I've started having more things happen. Very odd symtoms. I used to wake up and feel weak in the legs, had to get my balance before stepping out of bed. Lately i've been waking up to a "shivering" (the shaking is waking me) and it feels like it's inside my body. The only way i can describe it is to say it feels like i'm having a siezure in my sleep. My whole body shivering. (It usually wakes me and stops) but one day my husband woke me in the middle of it and I was still shaking. I made the comment I was cold - although it was mid summer and very very warm.
I still have to go to the doctor now that the nero is faxing results of this positive lyme, but I can only wonder why after being tested several times before that it's coming back positive THIS TIME. I mentioned two tick bites 20 yrs ago when the majority of the pain started, and was tested then. (neg) My whole family has been diagnosed with autoimmune disorders. Mom has ankylosis spondalitis (sorry can't spell that) and diabetes and lupus. one sister has multiple sclerosis and copd, another sister has lupus, and another sister has fibro, diabetes. I've been dx'd with fibro, hashimotos, rh, anemic, copd and now a positive lymes. it gets more complicated every time i go.

 
Old 09-14-2008, 01:46 AM   #8
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Re: lupus fibromyalgia and ms

I got my results in the mail for the blood work and don't understand it. The lymes tested 1.34 (anything over 1.10 is positive) all the bands were non reactive under the IGG, but under the IGM, I tested ebv capsid 4.94 (anything above 1.10 is positive) EBNA AB positve with a 5.0 reading (anything above 1.10 is positive) I'd say those two are very high.
I've got this feeling I'll go in there and they're gonna try to tell me I've got lymes "recently" >>> that's the kicker. because i've tested before and it was negative.
I'd say 20 yrs ago, after having my first baby, I had gone to the doctor for achey legs, (couldn't climb stairs) dizziness was terrible. I had been told by that doctor that my bloodwork was fine. I had mentioned then that I had found two ticks about 4 yrs prior to this, and I believe then, they tested me for lymes. I've gone thru tons of bloodwork, mri's, dx since. Have been seeing the doctors this whole time for the same leg/hip pain, and since the first visit, i've gotten much worse. Not only can I barely climb stairs, but I can barely make it up hills. my right shoulder is almost immoble. (can not lift without my muscles shaking terribly and pain!) I've gone thru episodes of tremors in the morning, seizure like feelings upon waking up, feelings of shock in my shin and forearms, cramping in my feet to the point that my toes were curled in every direction, the list goes on and on. I have good days and bad. the last two times i've gone to the doctor, were new things. one morning I woke up to my neck in terrible pain on the right. by the end of the day, i was tingling and numb up the whole side into my jaw and lower ear area. lasted a few days and went away. The next time i had been playing skee-ball, and got "stuck" after playing i couldn't stand up ...terrible lower back pain. Another Mri, more blood work. this time is when it came back w/ a positive result. I go back to my physician on the 30th. Another kicker - maybe someone can explain this....my Mother has tested positive for lupus and epstein bar virus, plus other stuff. another sister tested positive for lupus, another sister has MULTIPLE SCLEROSIS. google lupus, epstein barr, ms, and lymes once. there is belief that epstein barr is a trigger for multiple sclerosis, lymies get dx w/ ms, they all have similar [email protected]@

 
Old 09-14-2008, 08:42 AM   #9
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Re: lupus fibromyalgia and ms

Judy, there is certainly a lot going on in your family, and some of the things are genetically inherited but not necessarily, like Lupus. But from reading from your first post I thought you probably have Lyme disease. I don't know that much about it, just from reading posts on here. But it really soounds like lymes disease and not FMS. Is the doctor treating you for Lyme?

Sunny

 
Old 09-14-2008, 09:14 AM   #10
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Re: lupus fibromyalgia and ms

Thing to remember about lymes disease is sometimes even though it was treated once long a go, sometimes it can come back and mask other conditions to. I am trying to get my doctor to re-test me as I have had lymes disease in the past. SInce I am in Michigan and it isn't as abundent here as it was in NY. So she sees no reason to check. But I know I have been treated for it 2 x's already and have only been bitten from one tick. But also since I have spent a lot of time on vary anti's because of my asthma going into bronchitis, and bronichial P and sinus infections a lot of the anti's don't work for me. I have grown a tolerance to them. The reason I have been pushing the issue and still trying to get her to test is because she already tests regulary for the cholesterol and diabeties, liver and thyroid so what 1 more test? Heck you are already in the vein anyways. LOL.

In the last 2.5 almost 3 years now. I went from having asthma, allergies and acid reflux. To having a heart attaack in Nov of 06 at the age of 37. So now I am being treated for cholesterol, BP, Diabeties, heart condition, fibromyalgia, chronic pain, sleep disorder, depression. Think I covered everyone lol. Anyways in the last 2 years since the heart attack my life/health has changed so dramatically that its unreal and I am just having a major problem in accepting this change as now I can't walk or stand for more than 2 min without 10+++++ pain and numbness and weakness in both legs. Which incidently started just in my low back 2 years ago and now is all through my back from the neck down, through both side of my hips, both sides of the groin, and my tail bone andnow affecting my legs as well. Thing is I know I have had chronic pain before but with meds, or chiropractic work I would be fine; now the meds or anything doesn't work and if they do at all (they barely take the edge off.) I have spent the last 2 years in such pain on daily constant basic that would make childbirth without any meds seem like a walk in the park. I just have a lot of problem with accepting that it isn't something else. My opinion anyways. Though with MRI's and a discography I have confirmed what I knew 3 bad discs one of which had herniated/torn and has healed. I been telling my primary for prim near 2 years now I don't think it is just fibro, I feel it is something else as well. My hips and my low back are ultre sensitive and are hot enough all the time to cook an egg on them. (don't know for sure I am not a doctor, but that tells me inflammation and something else going on.) My honest opinion again. I know I also have sciatic nerve pain, and damage as it was proven over 2 yrs now that the disc in question have been pressing on the sciatic nerve. (again I am not a doctor, but it doens't take much to realize if you don't un-squish the pinch nerve you stand a good chance of permanet nerve damage or the nerve can die.) Again only my opinion. Its just frustrating being able to do everything and help others to being about crippled in 2 years time. Which is how I feel at the moment. I constantly have to stop and think about everything I do, even a simple mundane activity such as going to the bathroom is a chore. Getting up from a lying position I have gotten stuck many times already. At 39, this is just frustrating and frankly shouldn't be. As I also shouldn't be on 23 different perscription that I take daily (not to mention some of these meds I takes 2 or 3 times a day.) Its a lot of pills and by checking my blood levels reg because of certain conditions my blood levels are NEVER STABLE something or everything is always off. I just don't feel as I am getting of the health benefit of any of my meds, because there is such an RX cocktail.

 
Old 09-20-2008, 02:16 AM   #11
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Re: lupus fibromyalgia and ms

Quote:
Originally Posted by 1sunny1 View Post
Judy, there is certainly a lot going on in your family, and some of the things are genetically inherited but not necessarily, like Lupus. But from reading from your first post I thought you probably have Lyme disease. I don't know that much about it, just from reading posts on here. But it really soounds like lymes disease and not FMS. Is the doctor treating you for Lyme?

Sunny
I have yet to see the doctor about the test results (positive for the lymes and epstein barr) It is scheduled for the 30th. It just seems to get more complicated each time i see the doctor. i'll be back.

 
Old 09-21-2008, 08:49 AM   #12
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Re: lupus fibromyalgia and ms

Hi I would just like to say I know how you feel, I have a underactive thyroid Hashi's for three years now. I have pain somewhere in my body everyday just in a different place, I have inflammation of the duodenum, just had a colonoscopy that has showed multiple ulcers in the rectum, I am awaiting the biopsies results.

Been having bowel problems for months constapion, I had a fetel impaction back in Feb of this year.

I do have the ANAs abnormal RA factor!!

What does it mean to have out of range high IGG, IGM and IGA. my IGE Is in range...My Mum God bless her and my sister both had underactive thyriod, and lots of other Autoimmune Disease's...Take care ...Mad Maz

 
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