muscle weakness/wasting

[Guest tearose]

First, this is my personal experience and it may not be what would happen to you. I just want to keep anyone from overdoing and having similar consequences.

It was 1998, just after my first TTT, and seven years after showing pots symptoms, that I heard the term POTS from the doc in the Colulmbia Presb. ANS lab. He was the first doctor to explain what they knew then and he along with many suggestions, said to be sure I didn't ever allow myself to become deconditioned. In addition to the many symptoms of dysautonomia,

I had trouble opening doors, jars and walking. I felt weak and my legs had trouble with strength.

My muscle weakness/wasting was evident but my painful EMG showed normal results. So I decided to push myself...maybe I was a bit out of shape???? I pushed more. I am a tough cookie and at 107 and 5'3 1/2" I was not going to let anyone say I was lazy or out of shape! This pots stuff was NOT going to be blamed on lack of exercise!!! Although my inner voice said the doctors were wrong and my muscles were weak for another reason, I wanted to keep an open mind and try things "their way".

I found that I would get worse after exercise and so I learned about exercise intolerance. But how to find the balance? So I pushed a bit more, afterall "no pain, no gain" right?

I began to have more pain in my pelvic region. I had trouble digesting food. (no doctor ever talked about slow motility and fermenting food at that point) My gallbladder came out and still I had worsening pain in my pelvic and abdominal areas. Still, I pushed on...

In 2002, after more trips in the medical maze, increasing muscle weakness, and now evacuation problems... I finally found a urogynecologist who dx my problem. I was in stage three pelvic organ prolapse! I had pushed my weak muscles so hard that my weak, remaining muscle tissue had torn off my pelvis and colapsed down. My inside muscles would need to be repaired with mesh and tied up again!

I had a hellava seven hour surgery, problems with blood pressure, two blood transfusions and let's not go there right now recovery...

This is where I learned about peri-bottles. The soothing warm waters externally worked then and work now to help movement down under.

What I learned is: Be really careful not to be under OR over active. Don't let the doctors separate symptoms out from POTS!!! Many things are related to the dysautonomia. If I knew then what I know now. I would have pursued exercise with a much slower and careful pace. I would have been much more careful when lifting heavy objects. I would have worked with a physical therapist and nutritionist and occupational therapist to try and rebuild my muscles.

Anyone else have muscle weakness/wasting experiences? How are you managing?

Best regards, tearose

[Jersey Girl]

Dear Tearose, I also have muscle weakness on my left side and some muscle atrophy that has developed over the last 2 1/2 years when I acutely came down with what I now know was POTS. I had 3 MRI's over the first year because many physicians felt I had MS or had had a stroke, neither of which showed up. I also had evoked response potentials of my muscles and an attempted EMG of my left arm after the evoked potential was not completely normal on that one limb (it was too painful.). I have done leg strengtening exercises and more recently gentle Yoga which has helped as much as anything. My left leg is somewhat numb and I have been going to a massage therapist which helps somewhat. My left calf is also where I expereince the greatest amount of "autonomic swelling." Siitng in a chair will make the leg go completely numb. An acupuncturist told me that my left gallbladder channel was blocked. I don't have any scientific explanations other than nerve damage at this point. I wish I could help with better explanation or cure so I am sending my hopes and prayers to you. I agree not to overdo the exercise but also not to let oneself become deconditioned. Martha

[ETOLY]

The Chronic Fatigue Clinic at Johns Hopkins University Children's Center has some information on POTS and exercise. You may want to contact them for more information. See "letter "e." under "How are NMH and POTS treated?" at:

http://www.pediatricnetwork.org/medical/OI...ohnshopkins.htm

[Ernie]

Hi Tearose,

I went to a few neurologists about the general muscle weakness and my EMG is normal. I worsen every year and when I am without medication my legs can't carry my weight.

I am still trying to find a doctor who will know which medication to give me.

As far as the training goes I bought a recumbent bike and train at the lower resistance and watch over my symptoms. I only train once a week. I drink salt water every 5 minutes while training.

Ernie

[calypso]

Stress hormones have literally eaten away at my muscles and I have been left with a significantly reduced muscle mass. This is the scariest POTS thing to me -- although most others here don't seem to have this problem, so I don't know why only a select few do. My EMG was totally normal too, but my muscle circumference (measurement around my arms/legs) had gone down considerably in between doctor visits, and the neurologist had been keeping track of these measurements.

I have been unsuccessful so far at managing it. I am at 110 and am 5'5" (I am usually in the low 120s). My EMG was totally normal too, but when the neurologist measured my arm and leg circumference, it had gone down considerably over a couple months.

I have been trying a super-high calorie intake with light weights and resistance training (resistance bands). I have done a fair amount of research on muscle wasting and these are really the only things you can do, aside from amino acid supplements like L-arginine or carnitine (I don't know the safety of these and would definitely ask a doctor about them if you're interested).

I think the only way to stop burning off muscle is to slow down your metabolism. Beta blockers help if you can tolerate them. I think the key to reducing POTS symptoms is basically trying to re-teach your body to stop overreacting via daily meditation, trying to relax and not stress yourself out worrying about things, avoiding noise (which actually does cause a sympathetic response) and chemicals/pollution, exercising even a little EVERY day, doing things that promote parasympathetic dominance over sympathetic (like maybe massage therapy, yoga), and having a very nutritious diet.

E-mail me if you'd like. And I am so sorry you are suffering through this. How long have you had this going on?

Amy

[Guest tearose]

Martha, it is so interesting when someone else has the same issues and can shed a different light on things. How often are you doing your yoga? It is a comfort to know you too are surviving in spite of the challenges! Thank you so much for the prayers.

ETOLY, that is an excellent link! There is current information at Hopkins. Is that where your doctor is? I'm curious since I'm due back at Mayo, MN in February for a follow up and I'm not in the mood for that pilgrimage.

Ernie, if you can do training once a week on a regular basis that is good! I wish for you to find the doctor you seek to help you. I'm keeping my eye on the mestinon people are now taking to see if it helps people like you and me with muscle weakness. I hope to slowly, someday make my way back to using a treadmill again. I actually did hang gliding and hiking before pots. Now I'm getting excited about walking, amazing isn't it.

Amy, I'm going to look into those supplements, thank you. When I am able, I do meditate and do try simple gentle exercise but I know it is not enough. I'm trying to kick things up a smidge. After my last backslide and then we moved, then I dealt with the disability hearing, I haven't been as faithful with keeping the calm in my life. I'll work on that. I haven't looked more closely, but do the hyperadrenergic pots people have this muscle weakness more than the other kinds of pots people? Do you also have denervation?

With warm regards to all, tearose

[ETOLY]

Hi Tearose,

I do have one specialist that I see at Johns Hopkins. However, I came upon this site through someone I know that has Familial Dysautonomia. I thought the entire site was terrific for children and young adults. A lot of support and information that is helpful to both patients and parents. Happy to pass along the information to you.

Etoly

[Ernie]

Hi Tearose,

I took Mestinon last year and I had to stop after 3 days because of dehydration. I tried it 2 other times and the diarrhea came on faster. I had more muscle strenght but fainting more so it was not worth it for me.

Ernie

[yogini]

Ernie, You had posted a month or 2 ago about maybe seeing a doctor to investigate your muscle weakness. Is there any update on that? Glad to see you are posting more these days.

Tearose, are you still seeing a doctor at Columbia?

Etoly, the website info you provided is fabulous!

Thanks,

Rita

[Ernie]

Hi Rita,

I just called the neurologist,s office last Friday to find out and the doc did not call me back yet. I have been waiting for more than 6 weeks to get tested. The doc had told me it would be in October or November. So I wonder when it will be.

Please pray for me that he does what he promised and that everything goes well.

Ernie

[Guest tearose]

Rita, I saw a "young and in training" Dr. Daniel Bloomfield (or Blumfield) back in 1998, when the ANS lab at Columbia was just forming. I don't know if he is still there or what the ANS lab is like now. (if you need me to look back in my records for his name let me know) He didn't do any other testing or even tell me nearly a fraction of what I know now about this field, but at the time he was professional and helpful. As you know, the big wig in NYC now, is Axelrod but she prefers/cares to deal only with familial dysautonomia. In frustration and wanting to finally get complete dx, in February 2003, my local internist sent me off to Rochester, MN, Mayo Clinic. I was first out there in 1992, so I knew the system and they had a history of me. Getting around the Mayo Clinic is a learned skill. It took two weeks of intense testing and questions and answers and more intense tests but the neurologist (Dr. Robert Fealey) helped me and my team get some good answers and treatment ideas tailored for me. I am not looking forward to going back out there for follow up this February and so I asked Etoly for his information on Hopkins in Baltimore, MD. Are you looking for a specialist in POTS or did you find someone near NYC? I even tried Drs. at greenwich hospital in CT, (new ans lab last year) they knew less than me at the time ( in my humble opinion) so I never went back. I've been trying to manage with my local and very intelligent, dedicated internist. 2005 is a big year for my family and I'm hoping that I can put off any big expenses. Maybe I'll let Mayo wait one more year.

Till later, tearose

[yogini]

Ernie, I'm keeping my fingers crossed for you. Hang in there and keep following up with that dr every few days until you get an appointment!

Tearose, thanks for sharing your experience about the doctors. I've been to a few drs in NYC, but still looking. I'd love to talk to you about this further and get your thoughts, so will email you later today...

[opus88]

I don't know if this would stop or reverse the muscle wasting, but it sounds like there may be some worth to considering and trying virgin, unprocessed coconut oil. See the following for a page of informational links: http://www.wildernessfamilynaturals.com/st...th_benefits.htm

At 5'3 1/2" I was 94 lbs. last time I weighed myself (about 2 months ago). I've always been quite thin, but I was strong for my size and I worked out regularly. However, I have no strength any more. After being out of our house for the past 2 months and temporarily living in a ground-floor, ranch-style condo, I have gotten even worse. I didn't realize how much those stairs meant to my overall conditioning. It's really sad that at 43 I have the strength of someone more typically about 83. Even taking a long or somewhat brisk walk can backfire on me if I'm not careful.

[ETOLY]

Hi Tearose,

I do see a cardiologist at Johns Hopkins; and Dr. Khurana, who is a neurologist in private practice near Baltimore and is associated with Union Memorial Hospital which is located next to Johns Hopkins University. However, there doesn't seem to be a unit like the Mayo Clinic seems to have that specifically diagnoses and helps adult POTS patients. The Chronic Fatigue Clinic at Johns Hopkins University Children's Center, from what I have read, seems to be a more organized unit, but they are a pediatric unit. However, you might want to call them and ask for assistance or referrals.

Etoly

[Jersey Girl]

Tearose, I have been away from my computer the last 2 days but I wanted to tell you that I have a weekly 1 hour class in Yoga in my community, but I also purchased a tape at Barnes and Noble called "AM and PM Yoga for Beginners" by Gaiam with Rodney Lee and Patricia Walden that I try to do in between classes. I also bought a yoga strap and yoga blocks because I am not too flexible. It is a good tape for beginners. I have been going the last 3 weeks for neuromuscular massage therapy mainly focusing on my left leg and hip and left shoulder and have found that I have more strength and control of these muscles afterwards. My muscles were so tight that it was rotating my left hip forward. I went this morning and I feel so much better afterwards.

ETOLY, thanks for posting the article from Hopkins. It is one of the most informative that I have read. I think that Dr Khurana may have closed his practice to new patients. I wish John Hopkin U. Hospital had a similar program for adults.

Opus, I am throwing our my canola oil after reading about its industrail uses. thanks for sharing.

Take care, Martha

[Nicole's Mom]

Tearose and Rita,

Where do live? Nicole sees a neurologist in Boston, Dr. Roy Freeman who specializes in dysautonomia. He is at Beth Isreal Deaconess Medical Center and he has an ANS lab there. Nicole has been very happy with him.

Beverly

[yogini]

Bev,

I live in New York City, Tearose lives in Westchester County which is just north of here. Thanks for the suggestion in Boston, I will definitely keep that in mind. I'd still like to find at least one dependable doctor in NY, and that has been a bit of a struggle for me...

-Rita

P.S. How is Nicole doing on the beta blocker?

[Nicole's Mom]

Rita, Thank you for asking about the beta blocker. I just posted something new about Nicole- she has interrupted the taking of the Toprol because she was feeling so crummy - my new post will explain. I sure hope you can find the doctor you need. And you too Tearose so maybe you don't have to make that trek to Mayo.

Beverly