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Old 03-01-2009, 12:43 PM   #1
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Question Could I possibly have MD?

Hello all,

I am a 46 year old female, wife, mother of 2. I have been relatively healthy all of my life with the exception of high cholesterol, and non-specific tachycardia that has resolved for 5 years now. Forgot to add...basal cell carcinoma of the skin X3.

Over the past 2 years I had noticed increased fatigue, muscle pain all over but concentrated more in my thighs and back, heart palpitations, left hip and knee pain and in the past year noticed increased muscle weakness, dizziness. Have noticed trouble with shortness of breath with minimal activity in the past 6 months and difficulty at times with memory recall or not being able to think of the word I want to say. In the past 4 months have noticed a continuous fine tremor at all times. I notice it especially when I am doing fine skills such as attempting to put a label on a small bottle. My husband and co-workers have noticed it at all times.

All previous routine blood work and x-rays have always come back normal except for the occasional anemia with my MCV and MCH being low. They would tell me to take iron supplements and then the blood work would come back normal.

Then about 5 months ago my allergist did some different blood work on me. Showed abnormal serum protein electrophoresis with an M-Spike. Further testing showed the abnormal protein to be a monoclonal IgG lambda protein. At first they thought I might have Lupus so I was sent to a rheumatologist and he said it was not Lupus. He suggested a hematologist. The hematologist did bone marrow biopsy and it had no cancer so he says I have MGUS (monoclonal gammopathy of unknown specification) and just need to have the blood work and urine done every six months. Due to my other symptoms he did do a bone survey (x-rays)(negative except for some degeneration in thoracic spine), and an echocardiogram (normal). He is still stumped as to what is causing my symptoms and seems to not be sure where to go from here. He did have me go for a pulmonary function test Friday and I do not know the results of this test yet.

With all of the blood work this hematologist did...he even tested for Lyme, rocky mountain spotted fever, Epstein-Barr, Typhus, Parvovirus, Toxoplasma, and Brucella to name a few. All negative although the IgG was high on the Parvo and Epstein because I have been exposed to them, but nothing active... there were just a few abnormalities....

CBC

MPV 7.2 L
Mono# 0.7 H

Special Chemistry

Folate >20.0 H
Ferratin 14 L

Sed Rate 24 H

Creatine Kinase (CK) 151 H

The protein electrophoresis showed a high ALPHA-2 with the IgG Lambda monoclonal gammopathy and light chains. The M-spike was low in concentration.

The only thing abnormal on the bone marrow biopsy was that there were "insufficient plasma cells observed. This result does not exclude the presence of a plasma cell proliferative disorder." Not sure what that means.

The only other thing that was abnormal was my PTT (bleeding time). It was high the first time at 45.7 so he drew more and sent it to the Mayo Clinic in Rochester, MN for their panel. The APTT was normal at 23 but it did show an elevated D-Dimer and a high DRVVT Screen Ration.

I was thinking of asking my hematologist when I hear from him about the PFT if he thinks I might have MD, or something neuromuscular. I found this forum and decided to ask opinions here also.

I have always been healthy and being a nurse I don't like "complaining"...lol. But I have had to make it an effort for months now to just keep moving. I thought at first I'm just getting out of shape and older so my husband and I started walking a mile 3 times a week and after 2 months it was getting harder and harder for me with the muscle weakness and getting shorter of breath. So if I am just out of shape it should have been getting easier, right? I get so weak at times that I'm almost positive that I am not going to make it another step.

Any ideas from anyone would be greatly appreciated!! And I am keeping all of you whose stories I have read on here in my prayers.

Thank you and God bless,
mom22angels

Last edited by mom22angels; 03-01-2009 at 01:00 PM. Reason: Forgot one thing.

 
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Old 03-05-2009, 08:37 AM   #2
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Re: Could I possibly have MD?

"mom"

I understand completely the frustrations of not getting a diagnosis. I DO have a confirmed muscular dystrophy. We just don't know what type. There are 70+ types and only 20-30 can be proved through DNA testing etc. But my muscles are slowly dissolving every year.

My first impression is that it's probably not a Muscular Dystrophy. Your CK is barely elevated (normal is 80-120). Mine is 500 and I have a mild MD. CK leaks into your blood when a muscle cell dies, so the worse the MD, the higher the CK level.

You should definitely see a good neurologist or a diagnostician (Like Dr. House, but hopefully nicer!) I do not want to try to diagnose you. I'm no doctor but I've spent 100's of hours researching Muscular Dystrophy trying to figure out my own case. Pain is usually not a big factor in MD. The muscle deterioration is generally painless in 70% of the cases.

Have you looked into Multiple Sclerosis or ALS? They are both nerve-related illnesses. ALS is very rapid, I hope that's not the case. I wish you the very best.

 
Old 03-06-2009, 04:33 AM   #3
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Re: Could I possibly have MD?

Thank you Michigani for your input. Yes, I have thought of ALS, MS and even Parkinson's too. I just need to keep having tests done I suppose and see what they come up with.

 
Old 08-31-2009, 08:50 PM   #4
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Re: Could I possibly have MD?

I'm going through some of the same issues as you. I had a similar finding in my electrophoresis. Did he check your kidneys? I've been wondering if I could have amyloidosis.
Hope all is well with you.



Thank you Michigani for your input. Yes, I have thought of ALS, MS and even Parkinson's too. I just need to keep having tests done I suppose and see what they come up with.[/QUOTE]

 
Old 09-01-2009, 05:48 PM   #5
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Re: Could I possibly have MD?

Momack,

They have checked pretty much everything at this point. I have even seen a neurologist and had an MRI of my brain which showed what he called some "dots and spots" in both parietal lobes which can be connected to HTN or migraines, neither of which I have, but mostly they are "non-specific".

So I am done for now with the testing. I will continue with the hematologist every six months to keep an eye on the abnormal protein spike, but for the rest I will just have to live with and keep coping. I have been trying to eat a healthier diet and have started exercising daily. I still have episodes where I get very shaky, weak and have no energy and my lips and fingers tingle, but I know it is not my sugar or my heart anymore so I just rest through those episodes. I continue to have fine quivering in both of my hands and arms but I have learned to just be very careful and concentrate when i do any fine motor skills.

 
Old 09-02-2009, 07:39 AM   #6
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Re: Could I possibly have MD?

Did they give you odds of your MGUS remaining MGUS?

 
Old 09-03-2009, 03:38 AM   #7
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Re: Could I possibly have MD?

No, they didn't. Just said he would repeat the blood and urine every six months for a couple of years and if it did not increase then we could just check it every year after that.

 
Old 10-05-2009, 05:05 PM   #8
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Re: Could I possibly have MD?

You sound a lot like me, I have weird symptoms, pain everywhere, it was just in my hips and pelvic area. Now in the last few months I have started with aching like I have the flu all the time especially in my arms upper back and hands, the areas that I didn't have problems. I am very susceptible to heat and hot showers or baths. I have been diagnosed with chronic pain, chronic fatigue, arthritis, bone spurs, buldging disks on my back, bladder disease, endometriosis, sciatica, some have said maybe fibromyalgia and with all this you would think something would show in my blood work, it is normal as normal can be. I feel like I am slowly fading away, it has been 5 years! I think it is MS but I just had a brain tumor removed so the MS specialist said that you can't have both MS and a brain tumor. So he didn't run any tests. I am frustrated. Did you think of MS? I have twitching also and tremors especially when the pain is really bad. It's horrible. The last MRI before I had my brain surgery did show some lesions on the brain that is a sign of MS, have you gone for an MRI? They said they could just as well be from migraines???? I hope you find an answer just as I do soon. It's really harder not knowing if you ask me. My mom has lupus and they have tested me over and over for that negative. There has to be an answer for us. I will pray you find yours. Hugs and Good Thoughts!

 
Old 10-05-2009, 05:17 PM   #9
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Re: Could I possibly have MD?

I am 24 yrs old... Over 1 year ago all of my symptoms started... My very first symptom was burning thighs whenever I walked... especially walking up the stairs....(now I can barely walk up stairs)... anyway... it slowly started getting worse... I then had a dull achy pain throughout my entire body... I sucked it up and told myself that it was due to working out the day before.... or lifting heavy things... or sleeping wrong. That was all in about 6 months..... then comes the scary part of it... From about 4 months ago till now, I am experiencing severe weakness from my neck to my toes, SEVERE shock like, stabbing radiating pain that lasts for no longer than 10 seconds.... then it wil be gone.... but it happens all day long. The stabbing pain can be anywhere on my body at any time of day...head, back, arms, hands, fingers, toes, thighs, knees, butt, armpit, chest, ANYWHERE!!! So If I am lucky I will have an hour that goes by with no pain at all... But in between the bouts of the "shock like pain" I will most def have the dull achy pain that stays with me 24/7.

Other symptoms I have are confusion, major dizziness or vertigo(not sure which)... Extreme fatigue... muscle spasms, pins and needles feeling, numbness in hands and feet...

It is a bit embarassing... I am so young... and the way I look when I get out of a chair, or my car is ridiculous.... I am so sore, and in so much pain, and feel so weak like my bones are about to break, that it takes a while to adjust myself to start walking normal after I get up....

Does ANYONE else have these problems? Or would be willing to give me a helping hand or some advice?? All of my Docs think I am crazy... and too young to feel this bad...

I have been to so many doctors, and had so many tests done, that I feel like I am starting to go a little crazy because nobody can figure out what is wrong with me......

 
Old 10-06-2009, 03:48 AM   #10
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Re: Could I possibly have MD?

Hello tina,

I finally did see a neurologist last month and had an MRI. It showed what he called "hot spots" in both parietal lobes that are usually consistant with migraines or high blood pressure. Since I have neither of those and his exam in the office was not conclusive, he called them "non-specific" and said my problems were not neurologically based. So, I'm done with testing and doctors for a while. I have started taking natural supplements like Turmeric and Fish Oil and Glucosamine Chondroitin daily and Ginger. And I take either Tylenol Arthritis or Ibuprofen 800mg daily. So far those are keeping the joint and muscle pain down quite a bit so I can function. As for the daily tremors in my hands and arms I've learned to do things slowly like cutting vegetables at home or giving injections at worked so that I don't accidentally cut or stick myself...lol. I've started exercising daily alternating between the treadmill and the eliptical and kickboxing aerobics. I still feel very fatigued every day, but I do feel a little better overall by exercising and eating healthier too. That's all I can think of to do for now.

Quote:
Originally Posted by tinabean34 View Post
You sound a lot like me, I have weird symptoms, pain everywhere, it was just in my hips and pelvic area. Now in the last few months I have started with aching like I have the flu all the time especially in my arms upper back and hands, the areas that I didn't have problems. I am very susceptible to heat and hot showers or baths. I have been diagnosed with chronic pain, chronic fatigue, arthritis, bone spurs, buldging disks on my back, bladder disease, endometriosis, sciatica, some have said maybe fibromyalgia and with all this you would think something would show in my blood work, it is normal as normal can be. I feel like I am slowly fading away, it has been 5 years! I think it is MS but I just had a brain tumor removed so the MS specialist said that you can't have both MS and a brain tumor. So he didn't run any tests. I am frustrated. Did you think of MS? I have twitching also and tremors especially when the pain is really bad. It's horrible. The last MRI before I had my brain surgery did show some lesions on the brain that is a sign of MS, have you gone for an MRI? They said they could just as well be from migraines???? I hope you find an answer just as I do soon. It's really harder not knowing if you ask me. My mom has lupus and they have tested me over and over for that negative. There has to be an answer for us. I will pray you find yours. Hugs and Good Thoughts!

 
Old 10-24-2009, 05:59 AM   #11
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Re: Could I possibly have MD?

Hi, I was diagnosed after finding that my CPK was elevated. Have you had that tested? I gather normal is no highter than about 150, mine was 700. Granted, I had other tests after that but that was the first indication that something was wrong.

Marlene

 
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