I am posting for my mother who was recently dx with PMR and GCA. Before this dx, she was very, very healthy. She is 68. She like many of you is having a horrendous time. Between the pain, the shock and now the side affects of the prednisone, she is really having a tough time. I am so sorry for all of you who are suffering with this.
My question: My mom has had problems with her feet and toes getting tingly and numb. Her Dr doesn't seemed concerned about it. All the info we read about prednisone says to report this to the dr though. It seems she can't get a straight answer on what is causing this. Could it be the PMR? Is it a side affect of the prednisone? Or is it a part of withdrawl from the prednisone? She was at 60 mg and is down to 20 now. We wonder if she is decreasing too quickly or if the numbness is just a part of the whole package.
The dr thought maybe she should have some neurological testing done. I don't know the name of it, but it doesn't sound very pleasant at all.We'd like to avoid the testing if we can figure out another reason for the numbness. It is really driving her buggy!
Oh, I have registered myself on the boards as my parents do not have a computer. I hope that is okay. She really needs the support from those of you who are dealing with the same issues.
Rusti,
Welcome to the PMR message board. You'll find a lot of info and help on this site. It was a godsend to me when I discovered it last year, though my PMR was almost over with at that time.
I can't tell you about the numbness, as I never experienced it myself. However, if they are wanting to do a nerve conduction test on your mom, I had one of those done several years ago and was poked from the waist down to the foot on one side. The needles they use are really long and look scary, but they are very thin, and it doesn't really hurt. You can feel a few pricks, but not bad. So you can tell her not to worry if she has to have that done.
I hope you find the answers you need, and that your mom gets some relief. It's so frustrating when the doctors don't seem too concerned about things that are really bugging us. Most of the time, they are right not to be concerned, but they could at least explain things so we understand why they are not concerned. They probably just don't have the time to do that, though.
Reni
That would probably be a EMG test. First part is a nerve conduction which is very tolerable. The rest that includes placing pins in certain area's at diff. muscle levels, and depending on who is doing it, how experienced the person conducting the test, is not so tolerable to some people and ok with others.
If you can ask for someone who works with children as they often develop good techniques.
I've had at least six of these over the years.
If you are near a large facilitiy of neuro's or better a Medical University, you should ask for the QST as it is easy and often reveals a peripheral neuropathy that they call small bundle or sensory in nature.
EMG does not always, in fact not often, does it show up a PN that is sensory.
Numb toes and legs, of which I have as well is usually a PN. Certain medications can cause it as well as certain inflammatory illness's and diabetes ect.
Mom should be checked. Simple way may be to eliminate certain meds and see if it helps or just treat it like a PN. Drugs like Neurontin and Clonzepam ect. if it get's painful.
The other consideration right off the bat is circulation.
I'm sure Mom should be evalutated but you know it's up to you how far you want to go in finding out what this is.
My mom's Doc. is wanting her to have an EMG and I'm thinking, 84 years old....what are they going to do that they cannot just go around another way and not subject her to an invasive procedure, maybe for nothing.
Think we may refuse it.
I wish you all the best and so know what you are going through. We all hate prednisone. Yep. We like though not having the pain. What a swap off.
Keep coming and welcome. There will be others that will give you some help here.
Oh yes my numbness I think has gotten worse with the prednisone.
~Kewanee
Hi Rusti, Welcome. I have not had a chance yet to read the answers to your post, so hope this is not redundant. You didn't mention whether your mom is seeing a rheumatologist or gp. If she has not been referred to a rhematologist, that's a must. Most all of us will tell you we suffered terrible until we were referred to a specialist. There are a few GPs that have done a great job for people, but most of us have not had that experience. That's number one, then see if the rheum thinks she needs a neurologist.
The thing that makes me suspect she isn't seeing a rheumatologist is that you say she was recently diagnosed,yet started at 60 mg and is already reduced to 20 mg. That's really fast to reduce prednisone. Also, you didn't mention sed rate. Has she all the blood tests for RA, lupus and all that?
Good luck, God bless you and tell your mom to hang in there. At first it's the most frustrating and frightening thing, but hope will return, when you begin to understand PMR. We all have our down periods because it goes on so long, but it does help to know what's going on.
The folks on this forum can answer just about any question you might have. They are just great and are all eager to help and become friends. Love and God bless.
Hi Rusti:
Welcome to the PMR forum. I am (was) a very healthy 52 year old woman when I was dx last April. I have not had the GCA but have been on prednisone-started out at 20 and now am at 5mg which is not managing the pain. So, I will have to go up a bit. Relapses are not unusual with this stuff.
I have the numbness and tingling in my arms and hands a lot and a little in my feet. I have noticed it being worse as I have reduced the prednisone. I have had some issues with carpel tunnel before PMR, which can make it worse. So, your Mom's numbness could be from the meds. But it is always a good idea to eliminate anything major by going through tests
Your are a good daughter to be so involved with your Mom. It is very comforting when you know others know what you are going through. You will find this forum very helpful. The best of luck to you both!
Marla
Thank you all for your information and support. I guess I should have given more info from the start.