Can someone please help me?! =/

[mom_at17]

Hello everyone! Let me start out by saying im truly touched by alot of the stories ive read on this site and how supportive everyone is. This is my 1st time posting anything so im sorry if i make it a long story. My name is Gina and im 18years old. Going back to august 07, I gave birth to my son *which was when this all started* I recieved spinal anesthesia for a csection delivery and almost two days later i started having all these crazy symptoms such as tingling burning numbness twitching *all over my body* weakness loss of appetite cannot feel the urge to urinate nausea vomiting diarreah...everything! I also had postpartum depression for a few months which possibly made everything worse. I then had an infection which they said was a "superficial infection" at the site of where i recieved the spinal anesthesia and was given medication for a few days but it didnt help any of my other symptoms. I went to see a neurologist who did a ncv and emg and these were the results ...


Bilateral Media SNAP was slowed around the wrists. Right unular, radial and sural SNAP was normal. Right median, unular, peroneal, and tibial CMPA was normal. F-waves and H-reflexes were normal. Needle EMG of right arm and leg muscles was performed. Patchy small polyphasic were seen in muscles. Other muscles tested were normal.

Impressions:
Mild bilateral median neuropathy around wrists. Patchy small polyphasic units in proximal muscles suggested subtle myopathy.

so here iam almost 13months later and still continue with the twitching. i dont really have that much tingling or burning nor vomiting or diarreah thankgod. I kinda have my appetite back but deff not how it used to be and I still cant feel the urge to urinate. I can pee on my own but i dont know when my bladders full.. my doctor wants to do a muscle enzyme test (?) and maybe a biopsy but im really scared to do the biopsy so i totally refuse to go =( .. This is all very scary for me especially since im so young. My muscles are always so sore and i feel alot of pain from very little activity. Im still scared that i might have developed als from the anesthesia im able to do everything normally but i feel as if my body gets tired quicker.. has anyone else here had an emg and does my results sound like yours? should i worry about als? i remember reading a post about myopathy on here. does anyone know about that disease and what i should expect. anyhelp is much needed. thanks guys! youre in my prayers! <3

 

[lovelily]

Hello dear Gina! Welcome. I hope that I can ease some of your anxieties. I am probably the woman to whom you are referring to about biopsy and 'myopathy'.

I have had 2 biopsies, and the first one in the upper arm revealed what the doctors are suspecting in you. The muscle enzyme test is simply blood work that will tell doctors if there is any damage to your muscles.

I was awake for the first biopsy, and the area was just numbed. I did not feel a thing. They give you medication that puts you in a semi sleep mode, and you really don't care what they are doing to you. It is somewhat uncomfortable afterwords.

As far as you 'getting' ALS from anesthesia...no, this is not possible.

All the technical things you wrote about can be answered by Wright. He will most definitely come along and lend a helping hand.

Let your doctors do their job. They will take good care of you. I know it is scary, but in the end they will be able to help.

 

[Sammantha]

Bilateral Media SNAP was slowed around the wrists. Right unular, radial and sural SNAP was normal. Right median, unular, peroneal, and tibial CMPA was normal. F-waves and H-reflexes were normal. Needle EMG of right arm and leg muscles was performed. Patchy small polyphasic were seen in muscles. Other muscles tested were normal.

Impressions:
Mild bilateral median neuropathy around wrists. Patchy small polyphasic units in proximal muscles suggested subtle myopathy.


Your wrists have a slight nerve entrapment, kinda like carpal tunnel. In ALS your SNAPS are usually normal, these are your sensory findings. Your motor conduction was normal also which in ALS can be normal or slowed considerably. Patchy small polyphasic's in muscles were interpreted as a muscle disease by the technician. This means they think you may have a muscle disease. There are many muscle diseases and disorders. ALS is a disorder of the Axons in your brain and spinal cord where as muscle disease is a disorder of the muscle itself. You really should get that muscle biopsy, it can rule in or out a lot of things. It is not that bad. You are twitching a lot hopefully due to your muscles getting better. Sometimes when your muscles are damaged they start to get healthier and this causes them to twitch. Sometimes they twitch for no reason and sometimes they twitch because of ALS. So you really should get that biopsy. There were no fibrillations, Positive sharp waves or faciculation on your EMG and that is great news. These findings would suggest a possible axon disease. Myopathy is a muscle disorder.

Personally i feel like the shot may have damaged your spine a little and now your body is trying to recover. A muscle biopsy and follow up EMG after six months is what you need. Good Luck, Sam

 

[awieleba]

HI GIna,

I agree with sam! You had a surgery with an infection and a baby, it can take your body time to heal.
It sounds like your doc thinks it is myopathy. You should have the biopsy to clear things up and get on your way. I had a muscle biopsy, depending on where they do it, it could keep you down for a few days. Mine was in my thigh and I used a crutch but was fine in less than a week.

I have no diagnosed of als, but I can relate a little. MY symptoms started after the birth of my 3rd baby. I had a c-section also (it was my 3rd and never had a issue) and a slight post partum after. I think my depression was more related to all this, and I was not depressed, just anxious.

You sound like a very strong women at such a young age. It sounds like you have been through alot. I think you need to do what your doctor request you to do and you be able to move on from this. It sounds like you have a myopthy. *on a side note, I had read that when you get pregnant and give birth that you can get carpul tunnel. It was strange and I am not sure why. My friend did, and had to wear a brace on her hand for a few months after the birth of her daughter.

I wish you the best of luck

april

 

[wright]

Let me start by saying your symptoms and tests do not indicate ALS at all.

Sometimes after the body is subjected to stress . . . either physical stress (e.g. a pregnancy in your case) or mental stress . . . it causes autoimmune syndromes, which means your immune system attacks your body. This is a mystery that science and medicine are working on to determine the exact reason (as of right now, they don't truly know the mechanism).

Therefore, it sounds like your immune system is attacking your muscles causing a myopathy, which was indicated on your EMG (small motor unit potentials as you stated). The decreased SNAP at your wrist could have been there prior to all of this happening, especially if you lean your wrists on a keyboard a lot . . . and it's my guess it has nothing to do with what you are going through at the moment.

Bottom line . . . and in my opinion: you have an autoimmune disorder that is causing the production of proteins (these proteins are known as autoantibodies) that are attacking your muscles. There are various ways it can be treated (e.g. steroids or plasmapheresis or a number of other things your doc will discuss with you) . . . but sometimes it just has to run its course. Be patient and let your docs do their thing.

I'll once again leave you with this: your symptoms and the tests that you have had, do not indicate in any way that you have ALS. On top of that, it would be incredibly rare for anyone your age to have ALS.

Take care and lean on us if you feel the need.

 

[mom_at17]

Hello again everyone! Wow I didn't think anyone would reply so soon =] I just want to thank everyone that wrote back it means a lot to me! I have been very scared but im getting better day by day and once I clear up some issues with my insurance im going to go straight to the doc. Im from NY in rockland county.. Does anyone know of any good doctors around here? My doctor is ok I guess..but she didn't really explain my emg results to me. And also when I get the biopsy do I get to pick what part they do it at? Im nervous about the biopsy but I hope I can get back to normal! Does anyone think is necessary for me to get another emg? By the way how's everyone else doing?.. Good I hope! Thanks again soooo much guys! =] you're in my prayers<3

 

[lovelily]

Hello,

I am happy to hear that you are doing better! Most likely, your doctor will set up every thing that is necessary. You would meet with the surgeon before hand, and he/she will explain to you the whole procedure.

As you are from N.Y., I am sure that's were they will send you. My second biopsy was done at New York Presbyterian Hospital~Weill Cornell Medical Center. I was put to sleep for that procedure. Everyone was very kind!

I wish you the very best, as you search for your answers!

 

[Sammantha]

I am glad you are feeling better...... No, you do not get to pick where they do the muscle biopsy! Although you can make suggestions and maybe the doc will go along. Most likely they will take it from a muscle that has a high chance of being affected by a myopathy. Some myopathies go in a pattern. Good luck