Re: Re: I am back

[Guest guest]

Hi Fern,

My name is and I recently joined the list. I have dermatomyositis...was diagnosed 5 years and 5 months ago. Sorry to hear you aren't doing too well. That must be so frustrating.

A normal CPK range is 0-200. When I was diagnosed, my CPK was 18,000+...way up there. My sed rate for this past year has been at a constant 75-90 range...with this, 0-20 is normal. The sed rate is what they can determine the level of pain you are in. I am checked for both of these, as well as many other test, monthly, and have been for over 5 years now.

Have they looked into Fibromyalgia or Lupus for your diagnosis?

I hope you have better days....so sorry to hear you're not feeling well.

I'm happy to hear your computer is feeling better though! I hope to see you often.

=

*karen*

dm

..

[Guest guest]

Hi Fern, I'm so happy to have you back but I'm sorry your not feeling

well.

My lab reports show the cpk level 21-215. But Fern, remember that this

doesn't really prove anything. I have a cpk level of 62 and I hurt most

of the time. You'll have to refresh my mush mellon memory for

me....what is it that you have? Can you fill us in again?

Vicki-PM

[Guest guest]

,

Thanks for the welcome. I was diagnosed with fibromyalgia in 1993, however over the last year I have developed other symptoms that cannot be explained by fibro. I have muscle weakness in both thighs, both shoulders, and the most disturbing weakness is in the muscles of my rib cage and diaphragm that are making breathing difficult. When I struggle to get deep breaths all day, I start to have muscle pain and spasms around my rib cage. I also have difficulty swallowing and it has been diagnosed as a muscle malfunction. I have a rash that comes and goes all over my body, but particularly on my face, chest, neck, hands, elbows and knees. The rash looks like a very red sunburn type rash and it itches. I also get these tiny little white bumps that look like little whiteheads, but they are not pimples. I have had numerous tests for autoimmune diseases, but no one will do the proper tests for myositis. I am convinced especially with the difficulty breathing and swallowing that it has to be DM.

The frustration comes when you know what you need and you cannot get the doctor to send you to the right specialist or to do the correct tests. I am getting ready to go on an extended vacation to N.H. for July and August. I don't know if I should push to have something done before I go or wait till I get back. I intend to insist on being sent to an MDA doctor and/or a dermatologist.

It really got to me today. I went shopping (briefly) with my mother and I could barely breath or move when I got home. I was exhausted from struggling to breath and I was in pain as well. I spent some time on the sofa with the trusty heating pad and am feeling a little better now. BTW I have had respiratory tests done and they have ruled out a lung disease.

Thanks for listening.

Fern

[Guest guest]

Hi .... one thing I wish would happen is that all labs get together

on what is the normal reading. On my lab report my sed rate is 0-30

I often wondered about the sed rate test since I have had normal tests

for a very long time. Even when I am feeling my worst, it still reads

normal. It makes it hard to understand this disease.

Vicki-PM

[Guest guest]

Fern

Glad to see you back but sorry you are

feeling so bad.......dermatomyositis sounds

like a definite possibility........keep after them

to test you for it..........when I was dx they first

did the elec needle test...can't remember the

name but to pinpoint the exact disease they

had to do a muscle biopsy........find a site on

the net that has a good discription of systoms

that match yours...print it off and wave it

under your dr nose......keep us informed

Teddi - dm

[Guest guest]

Fern, the tests you had done on your lungs....did you get an xray or

catscan? I really feel for you since my lungs are also affected by this

disease. If your having problems breathing then it's the muscles of the

lungs. It hurts to take in deep breaths of air, yet you can't catch

your breath when your up and moving. It does sound like you have DM and

you really need to see a qualified Rheumatologist. Can you give me the

town & state you live in? I'll do some research for you. What

medications do they currently have you on. I can tell you for sure that

when you have the breathing problem you must find a doctor that can help

you out as soon as possible.

Vicki-PM

[Guest guest]

Vicki

It just seems that there is no rhyme or reason

about these diseases......nothing normal to

use as a guide

Teddi - dm

[Guest guest]

Oh Vicki,

I wish there was a decent rheumatologist in this area. I have seen three who saw the fibro diagnosis and just brushed me off. If there is someone that I am not aware of, I guess I would give it one more chance. I live in the Richmond, Virginia area. I have seen Broduer, Strachan, and Maestrello.

Did your chest x-ray or cat scan show anything? It hurts to take in deep breaths of air and it feels as if I cannot get enough air in them and I have to continually keep breathing in, much more than normal.

I am currently taking Talacen for pain, Soma for muscle relaxation, Neurontin for nerve pain (sciatic), and Ambien for sleep. I also take vitamins, calcium, Gaba, and neuro-phane (the later are amino acids).

Thanks for the help. I am going to call my family doctor in the morning. I have been like this all week and it is just getting worse. He is very compassionate and very openminded.

Fern

[Guest guest]

Fern, the xray just showed some lines which looked like cobwebbing...

but it was the catscan that showed the scarring in the lungs .... I'm

going to see if there are any other doctors in your area.... get a good

nights sleep.... Oh, did they ever do a muscle biopsy on you?

Vicki-PM

[Guest guest]

Fern, the xray just showed some lines which looked like cobwebbing...but it was the catscan that showed the scarring in the lungs .... I'mgoing to see if there are any other doctors in your area.... get a goodnights sleep.... Oh, did they ever do a muscle biopsy on you? Vicki-PMI had an EMG done several years ago before all this started due to my shoulder injury. It showed hypersensitive nerves. I have not had one since this started. I have not had a muscle biopsy and that is what I would like them to do. Painful or not if it gives a diagnosis one way or the other, at least then I know what to do next.

Hugs,

Fern

[Guest guest]

Fern,

The first paragraph screamed dm to me so loudly. Geesh! What will it take to get a doctor to listen to you. I hate that for you. I only suffered from difficulty breathing when I had a bout of pleurisy. I do have striations on my lungs, but nothing major and I have slight difficulty breathing on occasion, after walking around too much or climbing stairs. Please go to another doctor, even if you have to travel to them...it is worth it to get the proper diagnosis and begin treatment. I traveled once a month for over 5 years to Dallas, TX, which is a 4.5 hour drive for me, to see a rheumetologist. Please do whatever it takes to get them to listen and test you.

I do wish you would do this before you leave for your vacation...don't put it off...please go on and find someone who will listen to you.

Teddi had a GREAT idea too...find a site that has the list of symptoms that match what you have and print it out and wave it in the doctors face and say "Listen to ME"

=

And Fern, the muscle biopsy isn't painful...it is worth it to get a proper diagnosis. I had one taken on my right upper thigh...no problem...go for it. =

I do hope you find out what is going on soon so that you are able to have proper treatment started. Good luck and please keep us posted.

warm hugs,

*karen*

..

Re: Re: I am back

,

Thanks for the welcome. I was diagnosed with fibromyalgia in 1993, however over the last year I have developed other symptoms that cannot be explained by fibro. I have muscle weakness in both thighs, both shoulders, and the most disturbing weakness is in the muscles of my rib cage and diaphragm that are making breathing difficult. When I struggle to get deep breaths all day, I start to have muscle pain and spasms around my rib cage. I also have difficulty swallowing and it has been diagnosed as a muscle malfunction. I have a rash that comes and goes all over my body, but particularly on my face, chest, neck, hands, elbows and knees. The rash looks like a very red sunburn type rash and it itches. I also get these tiny little white bumps that look like little whiteheads, but they are not pimples. I have had numerous tests for autoimmune diseases, but no one will do the proper tests for myositis. I am convinced especially with the difficulty breathing and swallowing that it has to be DM.

The frustration comes when you know what you need and you cannot get the doctor to send you to the right specialist or to do the correct tests. I am getting ready to go on an extended vacation to N.H. for July and August. I don't know if I should push to have something done before I go or wait till I get back. I intend to insist on being sent to an MDA doctor and/or a dermatologist.

It really got to me today. I went shopping (briefly) with my mother and I could barely breath or move when I got home. I was exhausted from struggling to breath and I was in pain as well. I spent some time on the sofa with the trusty heating pad and am feeling a little better now. BTW I have had respiratory tests done and they have ruled out a lung disease.

Thanks for listening.

Fern

[Guest guest]

That is so odd Vicki...mine is normally right on target with how I feel. When I would go in this past year and feel so achy and sore, those numbers would be around 90...when I would go in not terribly achy, but it was there, they would be around 75. Last month when I went in I wasn't hurting and felt on top of the world, the number was 21. I just went today and had blood drawn...I feel pretty good today...a tad sore from not sleeping well last night, but nothing major. So hopefully the sed rate will reflect that with a low number, say in the 20-30 range.

=

*karen*

Re: Re: I am back

Hi .... one thing I wish would happen is that all labs get togetheron what is the normal reading. On my lab report my sed rate is 0-30I often wondered about the sed rate test since I have had normal testsfor a very long time. Even when I am feeling my worst, it still readsnormal. It makes it hard to understand this disease.Vicki-PM

[Guest guest]

hi karen you probably dont know me either my name is adannia and im 17yrs old

i was diagnose with dermatomyositis in 98, right now the DM is going very

well the only problem is the side effects of prednisone, right now im

suffering from avascular necrosis or lack of blood to hips and shoulders.

well karen i hope i have a freind in you not only because yolu sound like a

great person but also because me and you do have something in comnmon.

adannia

[Guest guest]

hi fern i agree with you a 100% even though im no way near a doctor but i

have the same symptoms the you have and i have DM sine 1998, i think you

should see a rheumatoligist and ask to measure you CPK.

[Guest guest]

,

Thanks so much for listening and validating my feelings. This year has been a tough one. I lost a dear friend that I spent time with every day and it has been tough emotionally. My symptoms have continued to get worse and I am sure the stress has not helped. And on top of all that, I have had horrible bouts of anxiety and irritability. I am now on medication for it, but I am still working on getting things calmed down. I think some of this has come from the Neurontin that they gave me for sciatic pain. The problem is do you put up with the anxiety and irritability or the pain. I have cut my dose in half and the pain is worse, but tolerable so maybe I will have to compromise on that one since the irritability is a little better.

The breathing difficulty also adds to the anxiety because it is horrible to keep feeling like you cannot get enough air into your lungs. I also fear prednisone. I have had to take it before for respiratory problems and it made me almost manic/depressive. I had horrible mood swings.

I have an appointment with my fibro doctor on June 21, but I think I will call my family doctor and see if he will see me or at least make a referral so I can try to get seen before I leave for N.H.

I did exactly what you said about copying info off the internet last night. I plan to take this to both doctors.

Did they do your biopsy with a needle or did they take a complete tissue sample? I had a mole removed a couple of weeks ago and I had a punch biopsy in the vulvar area too and neither were too bad. I wouldn't think the muscle biopsy would be much worse than either of those.

Thanks for everything!

Fern

[Guest guest]

Hi ... I always thought that if your cpk and sed rate were down you

would feel like a million bucks.....HA! I guess that was the thing that

upset me the most. But, my doctors did explain to me that this is not

uncommon with the Jo-1... It's just sooooooo much fun...

Vicki-PM

[Guest guest]

Hi Fern.... I had my muscle biopsy done on my upper left arm. They

deaden the whole area and take out part of the muscle. They have to get

a good section of the muscle so the lab will have enough to work with.

It didn't hurt and the stitches came out in 10 days.

To be perfectly honest, I think you should try to see a doctor at s

Hopkins. After they run the tests and anything else, you can then

follow up with your primary if you want. Now, where is s Hopkins

located?

Vicki-PM

[Guest guest]

Fern

In my case they did a tissue sample on the

shoulder......the scar is about 3 " .......it was

done as an outpatient .....they sent a rx for

pain home with me but the only time it

bothered me was when I rolled on it in my

sleep.....lol.......so I don't thnk clumsiness

conts <vbg>

Teddi - dm

[Guest guest]

Hi Fern,

I am just getting caught up in my e-mails.......our daughter graduated from high school this weekend, so life has been pretty crazy lately. I have had great results using the theories presented by the late Dr. McPherson Brown. I was able to have 10 house guests for two days with all of the cooking and cleaning involved......I couldn't have done that three or four years ago. For lots of years prior to his death, Dr. Brown did not receive much validation from his peers. It wasn't until a few years later that more and more physicians began to realize that he was on to something. He believed that the root cause of these diseases was from a mycoplasma infection....maybe from a previous strep throat, or walking pneumonia that stayed dormant for a number of years. Finally, there is research to back up Dr. Brown's practices. References can be found in his book called The New Arthritis Breakthrough, by Henry Scammell and also at the following websites: www.rheumatic.org and www.roadback.org Other doctors in your area are who are using this protocol are:

VIRGINIA Anne Bacon (IV and oral, worked with Brown) Arthritis Specialists of Winchester, 1730 Amherst St., Winchester VA 22601. Dr. (rheumatologist), Childrens' Hospital, Norfolk, VA. . C. Gent, D.O. 11900 Hull Street Rd. Midlothian, VA 23112 Dr. Horfman (IV and oral) Richmond, VA. email Horfman@... Philip W. Kempf, M.D. (rheumatologist, IV & oral) Ask for antibiotic therapy Arthritis Clinic of No. Virginia 2465 Army Navy Drive Arlington, VA 22206

Good luck to you. I have fibromyalgia as well as DM. Both are greatly improved since starting this treatment. My muscles are much stronger. I can lift a three gallon jug of water up to chin level to top off the water in my son's fish tank. When I first got sick, I couldn't even open the glass doors to my favorite store at the Mall! Times were tough!

Keep us posted, OK?

take care,

Connie

Re: Re: I am back

Oh Vicki,

I wish there was a decent rheumatologist in this area. I have seen three who saw the fibro diagnosis and just brushed me off. If there is someone that I am not aware of, I guess I would give it one more chance. I live in the Richmond, Virginia area. I have seen Broduer, Strachan, and Maestrello.

Did your chest x-ray or cat scan show anything? It hurts to take in deep breaths of air and it feels as if I cannot get enough air in them and I have to continually keep breathing in, much more than normal.

I am currently taking Talacen for pain, Soma for muscle relaxation, Neurontin for nerve pain (sciatic), and Ambien for sleep. I also take vitamins, calcium, Gaba, and neuro-phane (the later are amino acids).

Thanks for the help. I am going to call my family doctor in the morning. I have been like this all week and it is just getting worse. He is very compassionate and very openminded.

Fern

[Guest guest]

Connie,

Thank you so much for the information. I am very familiar with the research being done in the area of micoplasma. There is a physician who is doing research in Australia on fibro patients and micoplasma. I know a woman who is undergoing treatment for this. My reluctance is that I am so bad off right now I can barely take care of my children. My husband works long hours and cannot afford me to be completely unable to help with cooking, grocery shopping, and laundry. I do have a cleaning lady. It isn't that I don't want to get better, it is just that the lady I spoke of became so ill from the treatments that she could not even bathe herself.

I will think about it, but I doubt I will pursue this avenue of treatment at least for now.

Gentle hugs,

Fern

[Guest guest]

Hello everyone....

Fern, have you been able to get an appt with anyone else? I hope so...

I know how horrible it is to just be so sick you can't do anything, but

to have children and a husband to care for is 100% harder. Take care,

Vicki-PM

[Guest guest]

Hi Fern,

I can sure understand your reluctance to try the antibiotics based on the woman that you mentioned who is having such a difficult start. Most people experience a TEMPORARY increase in their symptoms.....from the fatigue, to the aches and pains....but it usually is not as severe as the lady you mentioned. She might have had an easier time if she had started the Minocin (if that is what she is taking) on a greatly reduced basis. Some people start with only 50mg of Minocin on say Monday and maybe Thursday for a week or so, and then gradually go to 50mg on Monday, Wednesday, and Friday. She could then gradually move up to 100mg once a day on Mondays, Wednesdays, and Fridays and stay at that level.....or she could build up to 100mg twice a day on Mondays, Wednesdays and Fridays. That is pretty much how Dr. Brown treated his patients. Many doctors now follow that pattern, but others go to the daily routine. There are lots of variables and each case needs to be treated on an individual basis. It is really helpful to find a doctor who is knowlegable and is actively using this protocol.

I forgot to mention another website that contains more information on the latest research in this area. It is www.immed.org and is based on the work of Dr. Garth Nicholson of Huntington Beach, CA He has lots of information on mycoplasma and its possible connection to Fibromyalgia, Chronic Fatigue, Gulf War Illness, and the Rheumatic diseases.

Dr. Nicholson also outlines some possible ways to alleviate some of the initial discomfort that most people experience. The increase in symptoms is called a Jarisch Herxheimer Reaction....which is named after the doctor who 'discovered' it. Interestingly, people with syphillus (spelling?) who begin antibiotic treatment usually experience the same thing. It is caused by the toxins and dieing off of the organisms as the antibiotics reach their target. If one thinks of the temporary increase in pain as a positive sign that the antibiotics are working, then it seems to help one endure and know that better days are coming. In my case, I noticed for the first month or so that I was much more fatigued and achy, especially within a few hours of taking the Minocin. This lasted maybe eight hours or so.......so I started taking the Minocin in the evening (just not RIGHT at bedtime, because the Minocin has to have a good chance to tumble all the way down the esophagus and into the stomach because it can cause a nasty burn in the esophagus if it stays too long like it might if one went directly to bed after swallowing the Minocin.) I was still able to function, although at a somewhat reduced level.......we ordered pizza a lot!

So do what you need to do, Fern.......these diseases are the pits, aren't they!? I wish you pain-free days and nights of good sleep!

take care and hugs, too,

Connie

Re: Re: I am back

Connie,

Thank you so much for the information. I am very familiar with the research being done in the area of micoplasma. There is a physician who is doing research in Australia on fibro patients and micoplasma. I know a woman who is undergoing treatment for this. My reluctance is that I am so bad off right now I can barely take care of my children. My husband works long hours and cannot afford me to be completely unable to help with cooking, grocery shopping, and laundry. I do have a cleaning lady. It isn't that I don't want to get better, it is just that the lady I spoke of became so ill from the treatments that she could not even bathe herself.

I will think about it, but I doubt I will pursue this avenue of treatment at least for now.

Gentle hugs,

Fern

[Guest guest]

Hi Fern,

Sorry to take so long to get back with you. I went out of town Friday afternoon with hubby and we returned Saturday and I did nothing all day Sunday but recoup from the trip.

I do hope you are able to find out some answers really soon. It must be so hard not having a proper diagnosis.

I know exactly what you mean about the mood swings with the Prednisone. When I was initially diagnosed, that is what they put me on...after I had been on 40 mg daily for about 10 months, I was really loosing it. I don't know how my husband or my family tolerated me. Late one night, I went to my sister and told her I wanted to commit suicide, that I just couldn't take it any longer...the next day she had me at my doctor's office and he prescribed Zoloft 50 mg daily for me. It took 10 days to kick in and when it did...the cloud lifted and I was my old self again. Thank goodness my sister acted quickly for me...I owe her big time for that one!

With the biopsy I had taken, I was totally put under. The majority of my pain was in my right thigh, so that is where they removed muscle from me. That was January 1995, to this day I have a 2" scar, which I don't mind having...it is better than not having the right diagnosis.

Now, if they only knew how to get rid of these myositis diseases....

I hope you are doing better. Take care.

*karen*

dm

Re: Re: I am back

,

Thanks so much for listening and validating my feelings. This year has been a tough one. I lost a dear friend that I spent time with every day and it has been tough emotionally. My symptoms have continued to get worse and I am sure the stress has not helped. And on top of all that, I have had horrible bouts of anxiety and irritability. I am now on medication for it, but I am still working on getting things calmed down. I think some of this has come from the Neurontin that they gave me for sciatic pain. The problem is do you put up with the anxiety and irritability or the pain. I have cut my dose in half and the pain is worse, but tolerable so maybe I will have to compromise on that one since the irritability is a little better.

The breathing difficulty also adds to the anxiety because it is horrible to keep feeling like you cannot get enough air into your lungs. I also fear prednisone. I have had to take it before for respiratory problems and it made me almost manic/depressive. I had horrible mood swings.

I have an appointment with my fibro doctor on June 21, but I think I will call my family doctor and see if he will see me or at least make a referral so I can try to get seen before I leave for N.H.

I did exactly what you said about copying info off the internet last night. I plan to take this to both doctors.

Did they do your biopsy with a needle or did they take a complete tissue sample? I had a mole removed a couple of weeks ago and I had a punch biopsy in the vulvar area too and neither were too bad. I wouldn't think the muscle biopsy would be much worse than either of those.

Thanks for everything!

Fern

..

[Guest guest]

I have bad news and good news. I have continued to have trouble breathing and my muscles are very weak. I could barely turn over on the massage table today. I am so tired and I have so much to do. We are getting ready to go to New Hampshire for two months. I am really looking forward to the trip, but am worried about how I will handle it.

The good news is that I talked with my family physician today on the telephone. I told him about the difficulty breathing and the muscle weakness. He says that he is convinced that I have an autoimmune disorder. He knows what myositis is but he doesn't know a great deal about it. But he is the kind of doctor that wants to learn and wants to help. He said for me to bring him information from the internet and from this group and we will review it together and decide what to do next. He is planning to check an ANA, CPK, sed rate, and Anti Jo-1 antibody tomorrow. He said he wasn't familiar with anti-Jo but he is willing to do the test just the same. He also wants to try me on prednisone for a short course to see if it improves my symptoms.

Do you guys have any other suggestions for tests or anything else I should tell him tomorrow. He also said that he would refer me back to my neurologist or to one of the doctors that you told me about.

Thanks,

Fern

[Guest guest]

,

I hope you had a good time one your trip. Sometimes we have to sacrifice a day or two of down time to have a life. I know I for one am not willing to give up everything I enjoy just because I have an illness.

I guess you saw my other message to Vicki about having a doctor's appointment tomorrow to talk about DM. He is a very compassionate doctor who is willing to listen to whatever I have to say even if I am trying to diagnose myself. So many doctors are threatened by the fact that I am a nurse and I do research on everything related to my health. But my doctor actually likes the fact that I come into my visits prepared with lists and printed information for him to read. He is going to do some further tests tomorrow and he is going to prescribe a trial course of prednisone to see if it improves my symptoms. What dose and frequency is prednisone usually prescribed for myositis? As far as a scar goes, I have several anyway so what is one more if it produces a diagnosis.

I have one other question. Do myositis patients experience more pain when their muscles have been exerted? I find that I don't have much pain until I try to use my muscles for some task. For instance I skimmed the pool the other night and thought my arms were going to break in two afterwards. They also go very weak afterwards. I could barely hold them up to brush my teeth.

Gentle hugs,

Fern