September 24, 2015 at 4:40 am #75680I am searching for answers
Not sure if I am in the right place. I really am not clear with that is going on with my health, but thought this board might be helpful. I am 32 yr old female who started experiencing muscle weakness in March 2015. The weakness started in my legs and I would feel it at random times, when I held my 2 yr old daughter. They would feel weak and jello-like, then I had to put her down really fast because it felt like my legs were going to give out. This happened a few times a month but I didnt think too much of it. My dad has been ill for the last 20 years- and finally diagnosed with Peripheral Motor Sensory Demylieating Neuropathy. So in the back of my mind I was wondering if my symptoms were something similar. In April 2015, I decided to hit the gym and work out (which has never been my thing). I was working out for about a month. One day I ran, about a mile and my knees got injured. Long story short, they weren’t getting better and I had a hard time walking- for about a month. They did blood work and my CPK levels were around 3000. I was having difficulty walking up stairs. They had me go in and do a biopsy of my right thigh. At the time it was just my legs experiencing the weakness. Nothing showed on the biopsy. They said it could be patchy and another biopsy might be required. Since then I have seen a rhematologist (which told me to go to a neurologist). Since my CPK levels have been normal every time they do the test. The muscle weakness expanded to my arms and recently my shoulders. Its my thighs, upper arms and shoulders- all in a matter of less than 6 months. They are trying to figure out why my CPK levels were so elevated then went back to normal. When I hurt my knees from running the short distance- it was over a month before the blood test so I wouldnt think it was that which caused the elevation. In addition, I have extreme fatigue. So much that I had to take a medical leave from work because I couldnt take care of my 2.5 yr old and work at the same time (I have 50/50 custody with her father). Its gotten to the point where I cant walk up stairs without my legs burning, do my hair, hang clothes– all that, without the burning sensation. My strength doesnt feel effected, its more that when I am using the muscle, right away the burning starts and I have to stop what I am doing. Hot weather makes my fatigue worse. I feel dizzy sometimes, I feel out of breath at times. Sometimes if I am over doing it, I will have a hard time breathing while I am trying to eat or just in general and have to take deep long breaths.
I met with a neurologist once and she said it sounded like a myopathy. It didnt sound like MS or a neuropathy. Next week we are finally doing the EMG. It seems like I am getting no answers. I know there is something going on with me, but they cant figure it out yet. I am learning that it seems like everyone with muscle disorders, nerve disorders etc- have to wait years and years for a diagnosis. It took them 10 years to diagnose my father. I am lucky that I do not feel pain. Its difficult being a single mom, just turned 32 and wondering what my life is going to look like. In less than 6 months so much has changed for me, in terms of my health. Does this mean it will keep progressing this way?
Any thoughts would be appreciated. Thank you!!cocowooParticipantPosts: 2Joined: 24/09/2015September 24, 2015 at 11:01 am #96933Re: I am searching for answers
Hello there and welcome to our forum.
I wish I could give you answers, we would all love to say “It is this and this will happen and we will do that” …. it is becoming common that diagnostics is not so much finding what ‘it’ is but ruling out what it is not. It does sound that your experiencing much more exhaustion and fatigue than I would have expected given your level of weakness, but sadly I cannot say whether it is one of the many MD’s.
Has no one considered testing you specifically for the same condition as your father? If only to rule it out? Or even ME?
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015September 24, 2015 at 2:36 pm #96934Re: I am searching for answers
Welcome to the forum.
We are sorry you have such worries and problems.
Wish there was an easy answer. Many if this forum have had quick and easy
answers to the questions you ask. Many others do not get exact diagnoses and
complete answers. It can be so frustrating! Some never get exact diagnoses.
The good news is that understanding of these conditions is increasing all the time
and there are networks of support and help that earlier generations just did not have.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010September 25, 2015 at 12:12 am #96935Re: I am searching for answers
Hello…I’m sorry to hear of what you are going through.
I have quite a few friends with ME and the symptoms that you’re describing sounds like it could be that, especially how it came on so suddenly.
Has no one considered testing you specifically for the same condition as your father? If only to rule it out? Or even ME?RainbowParticipantPosts: 7Joined: 23/09/2015September 25, 2015 at 8:34 am #96936Re: I am searching for answers
Sometime our medics need to tell us what they are ruling out as well as what they are looking for … yes I appreciate not every patient wants to know details but there are plenty of us who want that frank all-encompassing diagnostic discussion and being in the dark is terrible.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015September 28, 2015 at 8:34 pm #96937Re: I am searching for answers
Hi all. What’s ME?
They did the EMG today. I was thinking for sure it would give me answers. I was so hopeful. The neurologist told me the results were normal. That it rules out muscular dystrophy like my dad has, or nerve stuff. She’s not sure what to do, so they are sending me to the neurologists at UCSF (University of California San Francisco). I’m sure it will take months to get in. The story of our lives right!? Just waiting and waiting. I’m feeling really discouraged. I have these symptoms but the test results are coming back fine. My CPK levels are still normal. Just the one time elevation in June/July. Part of me wants to just throw in the towel, the other part makes me want to push myself back into being normal and healthy and screw what is going on. Push myself in the gym…. Go back to being normal. But I know that would make me feel terrible. I know I should be thankful for them ruling out things but no answers is so hard. I can’t walk up my stairs, carry my groceries, run, exercise….. Without my muscles burning and intense fatigue.
Thanks for listening.cocowooParticipantPosts: 2Joined: 24/09/2015October 4, 2015 at 2:30 pm #96938Re: I am searching for answers
Here’s a link to a website that might be useful for you: http://www.meassociation.org.uk/about/what-is-mecfs/
Here in Britain, M.E. is also known as chronic fatigue syndrome. I hope this helps.
SybyllasybyllascarlettParticipantPosts: 383Joined: 07/02/2012
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