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Old 07-28-2006, 05:25 PM   #1
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Question Can someone help me??

I have been through the ringer with docs and tests and such. I don't know what is going on. I have a VERY high ANA 1:1280. I have severe muscle weakness, tendinitis in both shoulders (today I can't even lift them above my head), I have had severe muscle shakes, tremors, whatever you want to call them. My arm started shaking uncontrollably. Some days my legs feel like they won't hold me up and sometimes my arms are too weak to hold the spoon to my baby's mouth. My rheumy sent me to have an MRI of my legs yesterday. What the heck is this mess? He seems to think I may have polymyositis. What is that? What can I expect. I did better on high doses of prednisone but when he tapered me down everything started all over again but worse. They hope they can find answers soon because he said my case is so baffling. I have a lot of lupus symtpoms as well and have severe Raynauds. Please help me if you can!!! I don't know what to do. I go back to work in a week and have two small kids and a husband who is scared he'll lose me in the near future.

 
Old 07-29-2006, 10:31 PM   #2
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Re: Can someone help me??

Dear Dutchess,
Polymyositis is an autoimmune disease where as your body attacks it's own muscle tissue. In Polymyositis, it is the muscles CLOSEST to your body trunk, like your thighs, abdominals, shoulders, neck. . .that are affected. Symptoms can be somewhat minor or it can be VERY debilitating. It is possible that it could be triggered by a virus, but to my understanding, the actual cause is NOT known.

Although I am new here, I DO know about Polymyositis. Like any other disease or illness, you have much better response when it is caught early on. Although, I have to say, most diagnoses of Polymyositis are diagnosed specifically by muscle biopsy and very high CPKs in your blood work. I don't think I have ever heard of a diagnosis for Polymyositis by MRI. I too have symptoms of Lupus but I have tested negative for it. I also have Reynaud's syndrome.

First line of usual treatment IS with the prednisone at a relatively HIGH dose for three to five months. It would seem that you had some sort of a response with it. However, if your doctor orders a muscle biopsy, the prednisone can interfere with the results of that biopsy. Pursue this, pursue this and PURSUE this.

Good Luck to You,
the DragonLady
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Old 07-30-2006, 05:55 PM   #3
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Re: Can someone help me??

Dragonlady,
Thanks for your reply. I have had some pretty bad days lately. The prednisone is at 20 mg but I will call him tomorrow b/c it is sooooo not enough. My arms, my thighs, and my shoulders are to the point it is hard to move them and it is hard to stand for long periods without fear of falling. I was told they will probably have to do a EMG test to determine the extent of the damage to my thighs. Thanks for your encouragement. I am really scared about this.

 
Old 07-30-2006, 08:36 PM   #4
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Re: Can someone help me??

Dear Dutchess,

I know it is scary as I remember those days rather well. I'd push the muscle biopsy on the doc if he suspects Polymyositis. An EMG is really a test to determine nerve damage which is something you very seldom see with straight up Polymyositis---unless he might be looking for something else. My doctor was also concerned about and wanted to rule out MS, hence an EMG and an MRI. Sometimes a doc learns MORE by ruling stuff OUT than by ruling stuff in. Personally, an EMG is not a particularly favorite test of mine.

Polymyositis is NOT a killer disease, but it definitely can be quite disabling. Typically, those who get it have about a 20% chance of death---so it is very rare to die from Polymyositis itself. However, the battery of medications that you sometimes have to take is another story. Even just with prednisone, you must be very careful about infections as it works by stomping down your immune system. We sort of NEED our immune system to fight off infections.

Weakness and a 'burning' type of pain are the usual symptoms of Polymyositis. Many people say that they've had the burning pain while many doctors say that it is not all that common. I had the burning pain---sort of feels like you've done one too many sit-ups. Do you remember your P.E. teacher saying to you to "Go for the burn"?

Lupus CAN be behind Polymyositis sometimes and I'm told it is not always easy to make a diagnosis of Lupus. While a blood test DOES shed some light on things as far as high CPK levels---a telltale marker of Polymysitis, a muscle biopsy is the most informative test. That has been MY experience as I certainly don't claim to know as much as your doctor. I just find that they're NOT all that great at listening sometimes. I've had to really push mine somedays. I've even switched doctors because I didn't feel as though they were aggressive enough with MY concerns---such as trying to get out of a chair.

I did have tremors---mostly because I was trying so HARD to do a certain thing or whatever, but the muscle just wasn't there and so my arm or whatever would just sort of quiver. I suppose that your joints and tendons must then compensate for muscle damage---hence the tendonitis, that's only common sense I guess. Falls with Polymyositis ARE definitely an issue. Obviously, you must be VERY careful.

This is something you MUST stay on top of as Polymyositis can progress to a degree that is extremely difficult to come back from. Personally, were I to do this all over again, I'd be CAMPED OUT on my doc's very doorstep until every available option has been DONE. Prednisone is not a pleasant drug to take and there are many side-effects that are quite harsh, which is probably WHY your doc has tapered you off of it. How long have you been taking the prednisone if I may ask?

Peace Always,
the DragonLady
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Old 07-31-2006, 01:29 PM   #5
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Re: Can someone help me??

Hey Dragonlady, I have been on prednisone for about 2 months. It started with 40 mg and tapered down weekly to 5 mg and now he has me back up to 20 mg. I have been on plaquenil for 4 months and he said it would take more than 6 months to tell the effects of this drug. I am trying to be optimistic and hopeful but I called the dr today and explain how the 20 mg is not making me feel that much better. At least not like the 40 mg did. They said they don't want to up the dose until they get the results of my MRI to see where the inflammation is. The dr. is a VERY aggressive dr. and I do trust his opinion, I am just concerned b/c I start back teaching a week from today!!
Thanks for your advise, any is helpful, Dutchess

 
Old 07-31-2006, 03:42 PM   #6
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Re: Can someone help me??

Dear Duchess,

When is your MRI?

My doctor started me out on 100mg of Prednisone a day and then began to taper it down about three months later as I had trouble tolerating such a high dose. However, typically that is what most physician's do---hit you hard with highest doses and then taper you down as symptoms improve. My doctor explained that he was "trying to hammer it in to a remission" and he apparently had some success with that approach with two of his other Polymyositis patients. However, the symptoms returned with a vengeance and it has taken me YEARS to get them back under control---and multiple medications to do it. I have been told that many people have good luck with JUST the Prednisone for a few months and never have any of their symptoms return. So hopefully that will be what happens for you.

Give me a holler if you want to know anything else. I'm really glad that you are comfortable with your doc---that's half the battle.

Peace Always,
the DragonLady
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Do not meddle in the affairs of Dragons, for you are crunchy and taste good with ketchup.

 
Old 08-01-2006, 10:18 AM   #7
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Re: Can someone help me??

Hey DragonLady, I received my MRI results that stated "nonspecific" results. So now I have been sent to a neurologist and my appointment is tomorrow. They also upped my prednisone back to 40 mg. When they did taper me down before my symptoms got sooooooo much worse and now I feel okay with it back up. At least I can function. Have you seen a neurologist? Do you know what I should expect?

 
Old 08-01-2006, 08:10 PM   #8
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Wink Re: Can someone help me??

Dear Duchess,
Yes, I've seen my share of neurologists. The initial exam is VERY thorough and painless . They test your strength and reflexes and your movements and they observe EVERYTHING very carefully. Someone with certain types of muscle weakness would present very differently than someone without muscle weakness. In general, you just move differently as your body compensates. So many diseases mimic one another in many ways. For example, my first neurologist said that I "walked like someone with Multiple Scherosis" . Fortunately, that was NOT the case for me as an MRI disproved that possibility .

I am willing to bet that the neurologist will order an EMG, which is basically a nerve conduction study. While it is not a pleasant test, it can be informative if there is a problem with the nerves getting their messages through to the muscles.

Good luck tomorrow !
Peace Always,
the DragonLady
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Old 08-02-2006, 07:45 PM   #9
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Re: Can someone help me??

Hi Dutchess99,
I can sympathize on what you are going through. Polymyositis might not be a killer but it is a disabling disease. In severe cases patient had difficulty swallowing, neck/abdominal weakness all of these I had besides muscle weakness. I can barely walk and I can’t even fold the laundry. I cannot do anything except sit down and lie down,very very tired. I started getting the symptoms in January 04 and I was going downhill every day. I was so scared. My PCP decided to send me to an autoimmune specialist on 3/1- she did not know what to do with me. I was suppose to see him on Wednesday but when he read my chart over the weekend, he called me Monday to come in right away. Polymyositis is hard to diagnose, without ruling out other diseases. Talking about aggressive doctor, that same day my doctor started ordering test one after the other. Within 4 days I had gone through a ringer of blood work, full body CT scan, EMG, and Biopsy. After eliminating other types of autoimmune disease, he told me that I have Polymyositis based on my symptoms and test results of Biopsy and elevated CPK but Polymyositis can be treated. He also sent me to another autoimmune specialist at University of Wisconsin in Madison for a second opinion. I was very lucky. These two specialists work together on my treatment.

My first treatment consist of 10 mg Methotrexate, 20 mg of prednisone 3x times a day, Fosomax, Vitamin E and D and Multi vitamin – this lower my cpk from 21000 to 13000 in a week but I noticed that I am getting weaker. I called my doctor and he told me that my body can’t tolerate methotrexate. He changed my meds to 150mg Imuran and 40 mg of Prednisone. A week later, I was down to 20 mg of Prednisone, 150mg of imuran Fosomax, Vitamin E and D and Multi vitamin. I started my treatment in of April and every week I was getting better and my CPK was down to 800 in June. This time he changed the Prednisone to 15mg and continued the rest of my meds. He consulted with the other specialist and they agreed to treat me with Gamma Globulin infusion to bring my CPK to normal - a series of 3 consecutive days/month for the next 3 months. The first treatment, he was so careful that I might have a reaction it took 9 hours for the IV treatment. I tell you, these combinations of treatments saved me. It took 1 ½ years to wean me off 15 mg of Prednisone, down to 50mg of Imuran and CPK is 43 as of June 06.

Dutchess 99 is your doctor an autoimmune specialis? I noticed that you are a teacher. One other thing that my boss did is to have me apply for FMLA. I was only out for a week during my worst time but I was getting my blood work done twice a week so I leave work a few times plus doctors appointment during the year. FMLA will protect you from unscheduled PTO. One more thing after my doctor took me down to 15 mg prednisone, he wean me off by just taking 1 or 1/2 mg on my schedule. I hope you get better soon.
Mword

Last edited by mword; 08-02-2006 at 07:48 PM.

 
Old 08-02-2006, 09:38 PM   #10
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Wink Re: Can someone help me??

Dear Duchess,
Ms. Word brings up some good points---supplements IN ADDITION to the medications like prednisone. Prednisone taken over a period of time can literally leach things out of your system like Vitamins E and Bs, it can also mess with your potassium levels, it will eventually cause problems with the bones---so you should be taking a calcium supplement and prednisone can actually induce Type II Diabetes over time. Your doctor will most likely be ordering routine blood tests for your sugar levels as well as your CPK levels.

You may have to address some of these things at one time or another. Prednisone at almost any dose will eventually contribute to/if not cause acid reflux which can be VERY painful when not addressed by something like prescription Prevacid.

Polymyositis is not a pleasant disease and it CAN be very disabling, but you don't have a confirmed diagnosis of it as yet. So I think this is one of those occasions in life where you might adopt the attitude of "Expect the worst, but hope for the best." Even if you DO have Polymysitis, there ARE many treatment options that could get you back on your feet with the right doctor and med combo. They know more about this disease than they did even just six years ago. When I was first diagnosed, people were sort of scratching their heads trying to figure out what to do. It was so rare, my doctor told me it would be a great day to "play the lottery." Unfortunately, with the use of the 'statin' drugs to lower cholesterol, we ARE seeing a rise in the number of people with Polymyositis. If you pay attention to some of those commercials, Polymysitis IS that "rare but serious side-effect."

A GREAT source of information would be the Muscular Dystrophy Association. Polymyositis was brought under THEIR umbrella about five years ago. That's great as far as research and support goes.

Ms. Word made another great point: FMLA. I was too ill to work for these past six years, but my husband would use it. My only knowledge of it is that it was designed to protect employees who had family members that needed a good deal of care. That's about as much as I know---he couldn't be fired for taking time off work to care for me---as long as he filed the paperwork.

I am now well enough to go back to work---doing a desk job. I have an interview on Monday. This is a VERY BIG deal for ME as I was told that I would most likely "be disabled for the rest of my life." I'm glad that I proved them wrong .

Peace Always,
the DragonLady
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Old 08-03-2006, 06:34 AM   #11
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Re: Can someone help me??

Thank you ladies for your information and support. I went to the neurologist yesterday. He did a full work up of neuro tests and said that my left eye is drooping. He said "is this new"? I said well I guess so, I never had had a drooping eye before! He wants me to bring in past pictures so he can see if it new. He ordered another round of blood tests including the cpk levels, myopathy study, neuropathy study, etc. I have to go for two more MRI's today to test my spine and lower back. He has ordered nerve conduction tests and EMG. He said if he couldn't figure out what is wrong with me then he would send me to UAB (world renowned hospital for research and unknown illnesses). He said I definitely have something going on, he just isn't sure what it is. He said MS is definitely high on the list of possibilities. I am just so tired of doctors. I don't want to be a guinea pig. I do see an autoimmune specialist. He is one of the best in the country I am told and both doctors are very aggressive. I take a multivitamin and also take antioxidant/mineral supplement. My meds are 40 mg prednisone, 200mg plaquenil 2x a day, 81 mg aspirin, and so far that is enough for me. I knew about FMLA but it is so hard to want to work and feel like crap. I just want to know what is going on. I feel like a diagnosis (no matter what it is) is better than living in the world of "we don't know what is wrong with you, but you definitely have something".

 
Old 08-05-2006, 09:51 PM   #12
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Re: Can someone help me??

Dear Duchess,

I know the frustration well. Hang in there! It is a rather odd thing, but KNOWING what 'it' is just makes you feel human again.

My neurologist said the exact same thing about one of my eyes. I was just SO weak and tired that it showed. They just have a thing for 'droopy eyes'! (Just teasing you!)

MS may indeed be high on your doc's list. You'll just have to be that 'guinea pig' for now. Going to a major research facility DOES have some good points. We used to drive for about five hours one way just to see a specialist. It was SO nice to meet with someone who knew what I was talking about and who understood the condition far better than my regular docs.

It's good that you're taking vitamins, you should also be taking some calcium supplements. You can buy the calcium chews with vitamin D in them---they're rather tasty and not terribly expensive.

Peace Always,
the DragonLady
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