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lovelily

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Hello members!

I know I will be welcomed. Thank you for that! I have been reading the site for a little while and see how supportive this family is. I am sorry that you are all traveling on such a difficult road.

I am a 49 year old female, wife and mother of 3 grown daughters.

My symptoms for this particular problem began about 6 years back, with terrible loss of balance....but I had issues with perpetual vertigo, (from age 19) which I can explain later, so I chalked the balance issues to that, and kind of shrugged it off. Then my legs began to feel as if the bones were hurting. Deep pain, as if no massage in the world was going to take the pain away. At the same time I got a buzzing in one foot. My right one.

I went to my doctor. I had my legs scanned. Everything was OK. I went to my Neuro....I already had one due to the vertigo issues. I tested positive on the Rhombergs exam. No need to worry. See me in a few.

I had a terrible fatigue set in, but then another problem hit. I had a series of small strokes. Put me in the hospital for a month, rehabilitation then back to the hospital because another TIA hit me.

They found the cause. I had elevated Pro Thrombin Time which made sticky blood, causing blood clots. They also found me to have "lupus".

So now I have these 2 problems in the hospital, but I cannot stand. Understandably I am thinking OK, a stroke will do this.

One of the PCP's decides he wants to do a muscle biopsy while I am hospitalized...but I was on coumadin so now they had to change to heparin to do the procedure.

The muscle tissue is sent to New York City for evaluation and it comes back showing "myopathic" changes. A mitochondrial order should be considered.

I was sent to Thomas Jefferson University Hospital to consider ALS and saw Dr. Enrica Arnaudo. She did only 3 sticks to my body with the EMG because of the coumadin. Which were normal (3 years back) the NCS was normal. Her opinion was that I may have a condition called MELAS because I suffered violent migraine type headaches. (I was checked) they did not find the variant in my gene.

One of the last things that was said to me and my husband was this. The thing about muscle diseases is that they need to find out whether the muscle is killing the nerve or vice versa.

In the past 3 years I have developed atrophy of both lower calf muscles and some small wasting of the hands and wrists. I have fasiculations behind my shoulder in my hands and next to my spine. Other times they pop up here and there.

I did have a second biopsy that showed denervation, recent and partially recovered.
Then an EMG of the opposing leg showed a few positive sharp waves with mild and acute and chronic denervation.

I saw a doctor in NYC who said it was (radiculopathy) this was "before" I had any muscle wasting of a different area.

Right now I have stopped the process of looking. It's enough to drive you insane. One more note. My father's dad died of this dreaded disease. I think I saw another person who's grandfather had passed away from it.

Bottom line. I have a muscle disease. I have lupus. Are they connected? The rheumatologist says, no. I have bad genes in the family. I do not have the ALS gene....but am still worried. Am I nutty? :confused:

Thanks for reading this....you're all great!
 

ltr

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I also have a high prothrombin time (antiphospholipid antibody syndrome), myopathy and have tested positive and negative for lupus anticoagulant (it changes it's mind constantly!). Is this the lupus you have? Because it goes along with the high PT (prothrombin time). You should be tested for antiphospholipid antibody syndrome. This causes high PT and strokes. It also is an autoimmune disease which causes myopathy....kind of a chain reaction! I hope you are going to a neuromuscular clinic and a really good rheumo involved with that clinic. I also have begun having the violent headaches which are a variant of antiphospholipid antibody syndrome and lupus anticoagulant. Have you ever tried high dose long term Prednisone. Also, did you have an anticardiolipin blood test? Please check into some of these things and talk to your docs about it. Good luck.

http://www.lupus.org/webmodules/web.../new_aboutaffects.aspx?articleid=82&zoneid=17

http://www.apsfa.org/aps.htm#5
 

lovelily

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Hello!

Thanks for the reply. Yes, I have a diagnoses for APS..I was removed from coumadin when my INR was stablized, and now am on 325 mg of aspirin. My Prothrombin time was elevated again last year.

I have been on prednisone for a few years and also methotrexate. The steroids gave my muscles a boost of energy, but as soon as they taper the muscles suffer.

Do you suffer with myopathy? If so, may I ask if you have any muscle wasting...cramping, etc?

Thanks for the links!
 

lovelily

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sorry...I see you have myopathy. :oops: It didn't penetrate my brain!
 

ltr

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Yes, and I can't believe there is someone with the exact same diagnoses as me. I have only been on Prednisone for 5 months and as soon as I tapered down the symptoms did get worse. Yet, the side effects of the Prednisone are somewhat bad too. I am also taking aspirin everyday and the rheumo found my vitamin D to be low which can cause more muscle pain and achiness.

I have excruciating cramping and twitching. The only atrophy I am sure of is my hands, but I also have an old shoulder injury and two bulging discs in my neck, so who knows what the atrophy is from. I really don't think you should worry about als right now because your problems may be caused from the aps and myopathy. Have they talked to you about Imuran or IVIG. That's is what is being discussed for me. Do you have a good clinic and docs? I am scheduled at Johns Hopkins Myositis Clinic next month. The docs here are bewildered by the twitching and say it is not a symptom of myopathy, but I have read a couple of patients with it. It worries me, too, when the docs aren't sure.
 

JohnKelly

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Lupus

I was diagnosed with lower motor neuron disease over three years ago but still no official ALS diagnosis. I have also been diagnosed with an autoimmune disease that has been variously called nondifferentiated connective tissue disease or lupus, depending on the rheumatologist.

Most neurologists tell me that they are not related. ALL rheumatologists believe that they are. There is alot of evidence that lupus can cause many kinds of neurological damage, including motor neuron problems. They're still trying to stop my progression with immune modulating treatments. You should not accept any opinion that tells you that you have two devastating diseases that are not related. The odds are astronomical. It's the equivalent of being hit by lightening twice in the same day. Keep asking questions and get as many second opinions as you can.
 

ltr

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That's exactly what I have said to my neurologists. What are the chances that I was doing fine, then became ill with 4 different diseases.....No way! I keep thinking if they would get to the bottom of it, they could stop my progression. Thanks John.
 

lovelily

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Hello Ltr and John!

I have been to lupus websites but no one has myopathy connected to the disease. This is why is still has me wondering what is going on. I have to agree about "lightening striking twice" though.

The doctors cannot give me a reasonable explanation. There is "so" much information in the muscle biopsy reports other than the bottom line diagnoses. The 2nd biopsy taken from the quadriceps shows "moth eaten fibers" other than the other things that is shown in denervation. Moth eaten fibers can be seen in connective tissue disease.

The doctors put me on the methotrexate to try to stop the atrophy. It is not that horrendous, but I cannot go for long distances or stand for long periods of time. I have a lot a trouble with declines....like those ramps in the mall. weird. My legs get like jelly.

John....see I had the opposite. My neurologist wanted the rhuematologist to say the atrophy was from the lupus. He was looking for an out. Or an explanation. I don't think any doctor wants to see their patients in trouble.

I have an appointment with the lupus doctor next week. I am going to ask some more questions.

Thank you both.
 

Sanders915

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So many unanswered questions, the good news so to speak is that myopathy and polymyositis mean you do not have als, only the symptoms mimic one another not the diagnosis. I prayed that is what I had although it is not a walk in the park, treatment and a normal life span usually ensue. I do not think I would give als a second thought if I had a myopathy, I would dance the best jig I could. I know you are concerned but I would be concentrating on myopathy and not be on an als forum. None of it is good, but life is life, and if you are going to keep it great news...
 

lovelily

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Ltr,

No, the doctors have not spoken about IVIG's. Maybe after they finish doing the methotrexate. Did you get checked for Mitochondrial disorder?

The best outcome for you when you have your clinic visit!


Sanders.....I am truly sorry if you have a motor neuron disease. My grandfather died from ALS. I was just a Tot. Thanks you for the encouraging words. I will take them to heart.
 

Sanders915

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Oh I am so sorry that you have to face this sadness, I hope and pray they get to the bottom of things, and soon. I love your screen name, it makes me smile whenever I see it..Keep us posted.
 

ltr

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Oh my god....what's next! Anyway Lily...do you have an email address? I said in my post, which was about 3 paragraphs long and took a long time to type due to the atrophy in my hands, that I would private message you when you were able to accept them. I am not sure why that, along with welcoming you and asking you to stay right here for support, was deleted for one sentence that the moderator didn't like, but I guess that's the name of the game!

Myopathy is a horrible illness that gives the same diagnosis and symptoms and debilitation as als. My docs said they couldn't say if it would ever turn to als, especially with all the twitching which is not normally seen, but all we can do is take the treatments and pray. Hope to talk to you more.
 
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