Advice on how to proceed

[Lees2114]

Hello and thanks to anyone who may read and take a moment to offer advice. Short summary of where I'm at (34 year old female): I'm about 7 months into my 'symptoms.' They began with an overall perceived weak feeling left side of body with trouble in small motor activities and developed tremor in my left fingers. My left foot feels weak and heavy. Twitching began a few months ago (all over but primarily in my left foot and hand). It's pretty much all day long in these two areas.
I rushed into testing over the summer and had a clean MRI, lumbar puncture and EMG/NCS (besides possible mild carpal tunnel in my left thumb).
I have tried to just move forward but my symptoms progress and I've noticed that the muscles in my hand, foot and calf look relatively smaller than my right and there is a sunken area in my left cheek (facial) as well. I can do most things as I always have, it just feels like a struggle and I have to work harder. For instance, I can only hold my children with my left arm for a very short time before it shakes or gives out. I've always been an active and athletic person and I am having trouble lifting even small weights.
My question to anyone who may offer advice is- where do I go from here? My neurologist pretty much sent me packing after the last test and my PCP thinks Mayo may be the next best thing. Has anyone been in a position like this with possible ALS symptoms progressing and if so, what is the best type of doctor to seek? I don't want to make the wrong choice at this point as I need to move forward to figure out what, ALS or not, may be causing my symptoms and muscle wastage. Thank you to anyone who may have a moment to respond, I truly appreciate it.

 

[Lees2114]

I also just wanted to assure that I have read the stickies posted in this forum and appreciate the helpful information. I am questioning how to to move forward as I am confused by the conflicting information I've read regarding EMG results being a- subjective or b- done too early and that these options are possible or not. Thanks again for your time.

 

[Clearwater AL]

Ask your PCP about a COMPLETE blood work up. There may be a few (or one) blood tests your insurance will not cover. But... that could be cheaper than bouncing from one specialists to another.

(Have your PCP have them read by a Hematologist if he is unsure.)

 

[Lees2114]

Thanks - I will do that. I have had several blood tests but surely could be missing a few. Thank you.

 

[Clearwater AL]

Today some doctors are actually beginning to ask patients (similar to your symptoms) about their eating habits. For many reasons from money to fear of gaining weight many people are eating just once a day. On top of stress at home and or at work along with poor diet or improper diet is causing physical symptoms. Accelerating this are those who work out along with all the above is near epidemic. Just adding this... hope you find out what is going on.

 

[WMS10]

When my wife's symptoms began, we saw a local neurologist who eventually suggested we go to Hopkins. Which we did, and we also went to UVA Medical. Even after the ALS diagnosis, we refused to accept it and tried all sorts of alternative therapies. She even had her teeth pulled because they had mercury fillings. Chiropractors, accupuncture, supplements, vitamins, nerve batteries, and much more. In hindsight, I wish we would have spent that time maybe traveling or better preparing for what was coming. We clearly lived in denial for far too long. My advice would be to make an appointment at one of the major hospitals (which ususally have an ALS clinic). Your everyday neurologists are generally reluctant to diagnose ALS. Prayers and best of luck to you. This is a great place for advice and venting.

 

[Lees2114]

Thanks- I do tend to stick to a pretty clean and healthy diet. My weight suffers when I get stressed (dips lower) and I've been in that mode for a few months now due to my continuing symptoms. It's a very confusing and frustrating time right now. I can't wrap my head around the possibility of ALS (especially with two young children). It's amazing how hard you have to push the medical system to get help sometimes. Thanks for your input and for listening!

 

[WMS10]

How old are your children? Our daughters are now 15, 12 and 9.

 

[Clearwater AL]

I'll just add this last. Nothing against vegetarians or those who eat very little meat but... humans are the top of the predator chain from our dental structure to both of our eyes being in the front of our heads. Our brains really developed after man (women too) discovered fire and became hunters. Protein deficiency will cause muscular problems.
Anywhooo...

 

[Lees2114]

Ha, thanks Clearwater AL. I have a pot roast in the slow cooker right now.
WMS ours are just 3 and 2 right now.. still little and very dependent!

 

[affected]

can't wrap my head around the possibility of ALS (especially with two young children). It's amazing how hard you have to push the medical system to get help sometimes.

Lee, why are you trying to wrap your head around this possibility? (rhetorical)
That's how WE felt after doctors told us this is what is happening, your doctors are saying it's not.

ALS is an incurable, terminal illness that is diagnosed by a process of elimination. You have to be patient and go through the process. Change doctors if you feel you have to 'push' the medical system, get a second opinion from an ALS specialist.

In the meantime, do yourself a favour and stay off places like this. You have young children, spend your time with them.

I sincerely wish you all the best with finding answers to your health issues.