Hi there,
I'm in Nor Cal and I was wondering why my visit to the neuro last year in Spring he didn't order tests for PN? ::)
He just said it is apart of Sjogren's and that I had to live with it. I saw him for migraines that my meds may have brought on.
No blood or skin or nerve tests... !!!!!!!!!!!!!! Do I have to wait for a Neurologist to get these tests? I am on a waiting list for months... :'(
Now I am taking salagen, flexeril just starting for muscle cramping, and 1mg methadone 2x a day for pain and hydrocodone/apap for breakthrough pain.
They were thinking cymbalta but I really enjoy not being as dry as I used to be on a dozen medications...
plaquenil didn't seem to be working - but maybe it was as I haven't taken it for 3 months after taking in for 2 years... and now PN is burning in my hands.
is sjogren's always gonna be the dumping ground diagnosis? shouldn't i be tested for deficiencies and other things? ???
I've read that one may go into remission or recover from PN if it is a deficiency like B12 for instance?! :)
Any gripes grumbles or good stuff? ;D
Thanks,
P
Hi P,
I'm glad that you started this thread as I am going through the same thing and was just thinking about asking the same question...so thanks for that!
I have had peripheral neuropathy going on for a while now...it was always in my feet and my neuro blames it on the sjogrens and now the newer diagnosis of diabetes. Mine is not painful so I haven't been on any meds for it...its just a numbness and sometimes prickly "falling asleep" kind of feeling...but it is constant and definitely spreading to my hands now with my right foot and hand being the worst.
I am going to my rheumy and neuro tomorrow in Chicago and will for sure talk with both of them about this and let you know if they come up with anything new.....and I will be watching your post for some answers from the others who may be experiencing this same thing!
Hi
Thanks for the question, I am newly diagnosed with Sjogren's after 10 years of symptoms and over a dozen doctors. I have had numb hands and feet for a year and I will be watching this thread to see what others say.
I did have a test for PN. It hurt. They send electricity through your nerves. When they hit a damaged nerve it hurts. The outcome was that I had PN. I also had a test for B12 deficiency but that was normal. The neurologist said PN is related to SJS. She did a neurological exam and said it was abnormal and it was SJS because of my positive blood work and go see a Rheum. So I did and he agreed. It is progressive for me even though I have been on plaquenil for three years. The pain is under control with neurontin (large dose) and Klonopin. I have to avoid getting hot which makes it worse. Being in the sun makes it worse too. I tried Cymbalta which was great except it made the mucus in my lungs dry and then I had trouble breathing so I had to stop taking it. Now I just found out the neuropathy has become autonomic neuropathy so I have damage to my Vagus nerve and my stomach is partially paralyzed (gastroparesis) and I lost a lot of weight. Plus I am having a lot of trouble with my blood pressure being very low. I actually fainted and broke a rib. I went to my doctor about it (I did a post on this before) and he said, "But you look great." Hey, that's what counts. I would make another appointment with the neurologist but she will give me more drugs. I take enough. This disease has been for me slowly and progressively getting worse. It has taken me a long time to realize I will not magically get better but I have learned to cope. Plus I got to get air conditioning installed in the house.
KL
Hiya
I was diagnosed with peripheral neuropathy about 3 years ago - even before the SJS was diagnosed. I have never had any tests, but had amitriptyline prescribed, which helps a lot. I saw a neurologist about 5 years ago for ptosis, but have not seen anyone since. A rheumatologiest diagnosed the SJS on the basis of my symptoms and blood tests an immunologist had done several years before. (The immunologist told me the results, but never did anything about them.) I have not seen the rheumatologist since I was diagnosed and apparently, unless things get really bad, there are no plans to send me back to see him.
I'm in the UK and our NHS is wonderful in lots of ways, but there seems to be a shortage of rheumatologists, so GPs are expected to manage our conditions on a daily basis, just referring back to the specialists when they need a second opinion. Private insurance is also available here - and I have it through my work. This has been a tremendous help with my recent bowel problems, but the insurance people won't pay for on-going treatment for chronic conditions - too costly I suppose.
Anyway, I'm not grumbling, but just wanted to show that people often do get a 'clinical' diagnosis, without having tests. For me, so long as the prescribed treatment works, I can live with that. If it doesn't then I go back and stamp my feet :)
Kathyx
Paperdoll,
Thank you for your concern. I guess I was not specific. I did get the air conditioning. We had a southern Arizona cooling system before of just a swamp cooler. It does not work during humid months like July and August. So my family (husband and son-in-law) put in air conditioning when I became very uncomfortable. I have had a lot of tests. And I guess for me I want to know that taking a medication is warranted before I take it. Like I won't take methotrexate unless the doctor can tell me it will help the disease. He can't say that. But I do take things that help with the symptoms.
KathyL
I had 2 neuros that did the MEGS on me, and said tehy were fine,, and when asked why do my feet and legs burn all the time,, I was told it was just a spine problem, it wasent until i got a new neuro that went the extra mile and did the skin biopsy that it showed periphal neuropathy
Just a little note here from someone who has an axonal motor neuropathy. In about 1995 or so I had an emg for the hundreth time. It did not show a pn but I was sent to the Med. Univ. in Augusta, Ga. and given what they call a QST test which showed small fiber axonal pn, big time. I had no reflexes in my feet.
Think it waned just a little until I flared big time and found out it is motor now. QST will show up a small fiber or sensory pn when emg often does not.
So, if you have one of those neuro's who does not know this or won't tell you that you could still have a pn with a clean emg, having an emg won't help you.
I questioned my last Doc. and he admitted they often do not show a small fiber pn as found in Sjogrens most typically. Yes, they can start as stocking pattern in the feet and glove in the hands. Some get alot of pain while others get not so much but parasthesia's of other sorts.
~Kewanee
I went to my appts. and had a bunch of labs run which included checking the Vitamin B12....it was normal. My neuro did ask where in my hand/fingers it is numb and mine is the worst in my middle, ring, and little finger area.....he said that the nerves that can cause that part of your hand/fingers to go numb are usually in the elbow area....if it in your pointer finger and thumb its usually caused from the wrist area.
He suggested that I try to wear something at night to immobilize my elbow area on the affected side....at this time I are not going to take meds for it but am to email or call him if it becomes painful or more bothersome with the numbness and he can prescribe something.....at this point I am on so many meds and I am trying hard to lose weight and get my blood sugars under control first due to my diabetes (which can also be the cause in addition to Sjgorens).
I don't know...when you have so many things going on...its hard to tell what symptoms comes from what diagnosis.... ;D. I guess we just have to keep taking it one day at a time!
Quote from: paperdoll on June 21, 2009, 06:55:25 PM
Sleepy,
I just know we'll get answers soon!
Be well,
P
Quote from: sleepy on June 21, 2009, 10:15:23 AM
Hi
Thanks for the question, I am newly diagnosed with Sjogren's after 10 years of symptoms and over a dozen doctors. I have had numb hands and feet for a year and I will be watching this thread to see what others say.
Thanks!
I have had neuropathy for over 11 years now and have been through all the routines. I would venture to suggest that you seek a second opinion from another neuro. Yes they can pretty much diagnosis pn with symptoms without test but that will not give them a picture of how it may be progressing. I have had nerve conduction studies done about four times and see my doctor usually about three times a year. The test were not overly painful and were completed fairly quickly. I am all about knowing the complete picture so I know what I am dealing with.
Neuropathy can lead to many problems(balance issues being a big one) that's why it is so important to monitor the progress. Test should be done on B levels as well as possible thyroid and diabetes issues. These can cause pn too.
I have been the route of most of the usual meds and have either become allergic or immune to most that are out today. I now use an alternative treatment using infra red light therapy that improves circulation and reduces the intensity of the pain.
Neuropathy is an issue that should not be ignored or treated casually. Nerves damage causes life long problems and whatever can be done to to slow the progress should be done in the early stages of the symptoms. The earlier it is treated the longer you can put off the disabling effects of it.