Rheumatologist Referral

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skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 3/14/2009 10:00 PM (GMT -7)   
I didn't bring this up in my posts on the doc upping my meds and switching me to the name brand of my pain med during my last visit. The PT lady gave me the names of a few Rheumatologist's to give my doc in case he wanted me to see one. I haven't mentioned it on here before but I have tremors that are quite bad at times and seem to get worse with exertion and when I am out in very cold weather. It also gets very bad (probably the worst) when I have been scared or frightened, the best example being when I was pulled over by a cop. Being pulled over startled me and that set my shaking off. I was shaking so bad when I handed him my license that he searched my car thinking I had illegal drugs on me. I didn't even take over the counter medications at the time but he didn't believe me! :-p

I never associated these tremors with my CP because I have had the tremors for 11 years (since I was approx. 18) and have only had CP for the past year and a half. My PT doesn't know if the two are related or not but thought it would be a good idea to have it checked out. I have been to several doctors over the years about these tremors and they all ran some tests and checked a bunch of stuff (especially my Thyroid, they always seem interested in that) but always found everything to be normal. The only thing these tests ever showed was that I have high cholesterol, for which I now take Crestor.

So I gave the doc the names my PT gave me at my last pool therapy. He said he would refer me to one of them but he wasn't sure what the reason was that he would give for the referral. My PT told me that he may just refer me for an "undiagnosed muscular disorder". My PT couldn't say for sure what she suspected but she brought up Fibromyalgia, Myofascial Pain Syndrome, MS and some other very scary sounding things. One of these things that stuck in my mind (both the PT and my doc mentioned it) was Lupus. I haven't yet read up on Lupus but I have heard of it before. I will do some research on it soon but I have been procrastinating because I do not want to scare myself when I haven't even seen the Rheumatologist yet! When I do read up on it, I may find that I do not have the right symptoms or something but when the doc and the PT bring it up, it makes me wonder...

I just wanted to mention this. I will find out Monday when I will be able to see the Rheumatologist. Since I am completely undiagnosed at this point in time, I may even find it a good thing to finally have something to point to and say "THIS is what is wrong with me!", even if there is no cure; this would be better information than I have so far.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/14/2009 10:57 PM (GMT -7)   
Skrape,
I'm not sure but I'm wondering about seeing a neurologist. I'd discuss this with your doctor on Monday, too.

PaLady

skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 3/14/2009 11:52 PM (GMT -7)   
When I had my most recent MRI in the hospital, they said that if they found anything they would send me to a Neurologist but they only found slight Scoliosis and slight Arthritis. So they bounced me back out with 2 days of pain killers and a recommendation to find a new doc (now my current doc). I will ask him about a Neuro referral. The PT said she didn't think a Neuro would know whats wrong but I would love to talk with one at any rate. Thanks for the advice, I will bring it up when I go back to my doc.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13454
   Posted 3/15/2009 2:45 PM (GMT -7)   
Hello Skrape,
 
So glad the doc stepped up to the mat and upped your meds. Has this helped any?
 
Skrape I read about your tremors and I do not think they are Lupus related, tremors are not a part of Lupus. I am under the care of a rheumatologist for medication induced Lupus caused by Remicade for my crohns disease. I take a Lupus, medication every day. Do some reading at the Lupus Foundation of America, its a very reputable web site. I think your mind will be relieved after you go there.
 
I do believe you should seek a consultation with a neurologist. This would be in their field of expertise. This dr can do whatever needs to be done to get to the bottom of this.
 
As for your physical therapist, please be careful there. Do not get caught up in the mix of a physical therapist trying to play dr and dx'ing you. We just recently had this discuss here on the forum about PT folks. I think it may have been Brent that had a bad experience but don't quote me on that. I have seen this happen many times before. Some folks think because they work in the medical field that makes them drs.
 
Push for a consult with a neurologist and forget about a rheumatologist, unless the neiro thinks its in order. Let us know how thing go...Susie


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 3/15/2009 5:37 PM (GMT -7)   
Thanks for the inquiry Susie. My doc upped the Fentanyl patch to 100mcgs x 72hrs and my Baclofen to 10mg x 8hrs. I have been doing better as far as the pain goes. It is my theory that it is probably the patch that did it and not the Baclofen but I am not sure. It seems that I always get so many meds changing at once that I never really know what does what.

I have had a couple of issues since the meds were increased. I do not usually get headaches very often but since starting the patch (almost 4 weeks ago) I have woke up with a headache every day. I didn't realize this at first but then I noticed that I was going through Excedrin pretty fast. This made me think and I have started making a mental note of when I develop a headache. I didn't really become aware that headache frequency was increasing until I was put on the 75mcgs patch. Noe that I am up to the 100mcgs patch, my pain from the headaches and the intensity and frequency of the headaches is increasing. This morning I woke with my head pounding really really hard. I had to take 2 Excedrin right after I got up and that didn't do the trick so I had to take another one around noon. For the most part, my headache has gone away today. I have been getting a recurrence of headache in the evening since going to the 100mcgs patch too. Before (on the 75mcgs) I would have a headache every morning but once I got it to go away, it was gone. Now I am getting two to three headaches a day and they hurt a lot more.

I need to read up on the side effects of Fentanyl and Baclofen again. I know that I have been speaking almost entirely about the Fentanyl here but I have not forgotten that he also doubled my dosage of Baclofen last Thursday AND I only started the Baclofen at the same time he increased the Fentanyl to 75mcgs (which is when I first became consciously aware that I was having headaches more than usual). So I will have to read up on them both and see if I can't figure out which it is. I am leaning towards the Fentanyl because it is such a strong drug but who knows!

I did want to mention that he switched me from the generic patch to the name brand patch. I put on a new (name brand) patch today and probably will not know if it is helping more or not until tomorrow. Only time will tell for sure! ;-)

I do totally understand what you are saying about the PT and to take her for what she is and is not. She definitely is not a medical doctor or anything like that, she is a therapist. I might have given a bit of the wrong impression. She did give me the names of several Rheumatologist's because she knew of some, they work in the same building as she does. She did also say that she was not sure if a Neurologist would know what was wrong but she also said the same thing about a Rheumatologist as well. So I am sure that she doesn't really know who/what could help me. I will leave that up to the doctors. If this Rheumatologist doesn't have any idea, I will definitely push to see a Neurologist. I really would like to see if anyone can get to the bottom of this.

Also, thank you so much for the information on Lupus. The only reason it came up and stuck in my head a little is that I had two people mention it as a possibility in the same day, actually within an hour of each other! Well, I am going to look up some info on the side effects and the possibility that some of my meds could be giving me the headaches.


Thanks so much again for the inquiry,


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 3/16/2009 5:18 AM (GMT -7)   
I did read up on the headache thing. Both Fentanyl and Baclofen list headaches as side effects so that is going to make it a littler harder to narrow it down. I was going to call my doc today and ask if I could cut the Baclofen dose back down to its previous dosage to try and see if the headaches got better.

This morning I woke up and did not have a headache at all! So, now I am not sure if I need to call him and ask. I think I am going to wait and see if my headache comes back again sometime today. If it does come back, I will check with the doc about cutting the Baclofen back down. Has anyone else been on Baclofen or Fentanyl and had headaches as a side effect/problem while taking these meds?


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13454
   Posted 3/17/2009 6:50 AM (GMT -7)   
Skrape if I were you I would run it by the dr first on rheumy or neurologist. I only say this because tremors is more the neurologist bag than a rheumy's would be.

Yep, I had H/A too from the patch. At least you are getting some relief, wow....Susie


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 3/18/2009 5:46 AM (GMT -7)   
I woke up this morning with a headache so bad; I do not think I have had one this bad since my last actual migraine headache. It is so bad this morning that I was vomiting. Doing that was pure hell with my head hurting so bad. I switched the patch yesterday so I do not know if this was the problem or not. All I know is that this is really, really bad and super-acute.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

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