Upcoming appointments

[Willow]

I have some upcoming appointments and wondered if some of you could give me a heads up as to what to expect.
I will be having an open (I beleive) muscle biopsy and soon I will be visiting the only neuromuscular clinic in our area (Eastern Canada) I know that they will be doing their own EMG study but I would like to know what else I may expect at this clinic. Do these appointments take all day (Clinic booked for am and EMG booked pm)? Are there other tests etc. they may do? I have already had one EMG test (approx 4 needles)done locally and an MRI, another being done soon.
Any information you could offer would be very helpful....thank you.

[Al]

Hi Willow. My 10 am appointments usually take until mid afternoon depending on who I see. They will take your history do a physical exam. Walk heel and toe, push here pull there etc and the EMG and probably a Nerve Conduction Velocity test and maybe a pulmonary function test. You may see an Occupational and Physical therapist, dietician and we even have a Chaplain for those that want someone to talk to. Probably more blood tests and then you might be done. It is a busy day and it is good to have someone else there with you to pick up the information you miss. Big Al or MTpockets has had a muscle biopsy so he may tell you about that. Good luck and let us know how you make out.
AL.

[Sunshine]

Hi Willow. My husband had a muscle biopsy back in November. He had it done at the same time he had carpal tunnel and ulnar nerve surgery so he was under general anesthesia. The muscle biopsy was done on his calf muscle. He was pretty sore for a couple of months and it took a while to heal. He has a 2 1/2 in. scar from it. He also had more muscle cramping in that area until it healed. There are also needle muscle biopsies that aren't has bad. I hope this helps some. Take care. Sunshine

[Willow]

Thank you Al and Sunshine I really appreciate your responses. My hubby will be going with me for my appointment at the clinic. It is over 4 hrs away so we'll head down the day before. My EMG and NCV here didn't bother me much at all but I am nervous of the biopsy. It will be done before I go to the clinic and hopefully will have some preliminary results for the Dr. there. They will be doing it on the back calf muslce, like your hubby, as that is where the "odd mass" is. They hope to get some of the mass to test. I was told that it would be about a 2 inch incision but I would be having a local not a general. I would have some bruising and restricted use for about 2 weeks or so, hopefully they are right.
Thank you again for the responses and helping to alleviate my nervousness.

[vmd]

What is the recommended number of EMG sites to be tested according to the ALS association?

[Jamiet]

i'm pretty sure, it's at least 3 limbs and 12 muscle groups, or 12 different places tested by the needle.

Also, make them do the tongue!!!

[Willow]

Thank you for the insight in regards to the EMG. When I had mine done he inserted one needle upper arm, one lower arm, one thigh and one or two in the calf muscle. I bled and bruised a little but it certainly wasn't a horrible procedure to undergo. I am hoping that the clinic I visit will do a more thorough exam. The neurologist that did my EMG/NVC test here looked at my tongue and asked if I could roll it, which I had no trouble doing.
This morning I had an MRI of the spine done and I am waiting for the biopsy to be done. I will ask at that time if they are taking healthy muscle tissue/nerves as well as damaged and the mass. I'm not sure there is any healthy muscle left in that area as it has shown as atrophied on the MRI.
Thank you again and please if there is anything else at all I should be aware of or ask please let me know. I will check back as I can to see.
Thanks again.

[vmd]

By rolling your tongue, do you mean as forming it in the shape of a tube?

[Willow]

VMD....yes...rolling the sides so it forms like a tube.

[vmd]

Thanks. I'll be seeing the neuro on May 17. I suppose he will eventually order the MRI on the spine. I already had one of my brain. I have problems with claustrophobia, however, so it could be tough.

[Willow]

VMD....something that helped me with the MRI was they gave me a dry face cloth that I put over my eyes as soon as I layed down.....BEFORE going into the machine. Then even if I opened them during the procedure I just saw the face cloth. It really did help alleviate the anxiety of it. Something you may want to give a try. Good luck with your appointments.

[vmd]

Thank you. Muscular weakness on my right arm and hand is progressing very rapidly, seemingly from week to week, so I'm quite worried.

[Al]

When I had my MRI they put a small mirror above me and had it positioned so that I could see out into the room. Ask if they have that available. It did help. Valium will too.
AL.

[vmd]

Yes, I believe this is partly controlled by genetics and some people cannot roll their tongues under any circumstance.

[CindyM]

Yup. It is a unique skill that certain families pass along to each generation. In my family we're not big in the brains department and can't dance even if someone from the old wild west were to shoot at our feet but we can all roll our tongues and we can pick a pencil off the floor by squeezing our bare toes around it. At least most of the family can. Some of us poor souls don't even have those talents! Cindy

[Willow]

That was weird.....I just replied to this thread and it didn't post. Oh well, I will try again.
Our MRI machines have the little mirror like Al said, so maybe they are standard in all machines. I just found the facecloth trick to work well for me. I've never been offered the meds but I can see that helping the anxiety a lot.
I didn't know about the tongue thing until I saw the neurologist....it is a genetic thing. We also used to do the pencil/toes thing... funny Cindy should mention that!!
I also wanted to let you know that I had my muslce biopsy and things went well. I am sore but managing, today is my first day doing our stairs here. He had to go in deeper and larger to get to the "mass" in my leg and unfortunately it is not a lypoma (sp?) (fatty tumour) like 2 of the Dr's felt it was. 2 other Dr's felt it wouldn't be that and I guess they were the ones who are right. It is apparently the muscle that has changed for some reason. He did take at least 3 tissue samples, I remember seeing at least 3, and so now we wait for results to see if they can tell what is changing the muslce. I go back in a couple of weeks and just take things easy till then. I hope we have at least some results for the clinic appt.
Thanks for all the responses. If you think of anything else I should ask at the clinic or focus on please let me know.

[CindyM]

here's wiching you a speedy recovery from your muscle bio, Willow! Take it easy on that leg this week, OK? Cindy

[Sunshine]

Hi Willow. It is good to hear that everything went ok with your muscle biopsy. I don't think I could have looked at any of it. I would have had to be looking in the opposite direction. I hope the doctor will have good news for you. Take care, Sunshine