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  • PN Prognosis? Is it disabling?

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    Old 11-14-2003, 06:48 AM   #31
    Kathim
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    Lightbulb HHHHHHHmmmmmm again........

    Hi Islandlady !!!

    A few thoughts for you after reading your post.

    I assume you are "NOT" on lipitor ???? Or another similar statin druug ?????
    Yes...they can wreak havoc with the body........my athletic husband who was once a tour pro golfer was put on lipitor and after only a short time he developed serious muscle problems....he stopped and is very angry at the Dr's as it fell on deaf ears his complaints. He palyed in a tournament with one of "MY" Drs and just so happened a drug rep for Lipitor and the rep told him of all the bad side effects !!!!!!! He is now on a drug called Zetia and it is fine for him.

    Second......the apnea could very well be a culprit...especially since u suspect it!!! The only way for a true evaluation would be a sleep study and I dont suppose you have that advantage where you are at ??? It was explained to me that if you are cutting your oxygen supply off while sleeping (unknowingly) you are making your muscles/nerves actually die sortof)
    I am on a CPAP also........BUT........since my esophagus problem in August I have not been using it.........I am going to start tonight and see where it takes me once again...lol... I only got it in APril...and it is a pain in the behind.... I have very mixed feelings on it.

    I am sorry about your reaction to the neurontin but actually maybe it is good to be off it !!!!! I have mixed reactions about it also!!!!!
    I hope they told you to dose down slowly and carefully?????
    It has definately helped me about 65%...........of course I am still dosing myself very low.......200 @ [email protected] [email protected] 3pm...........It seems to be holding so....will see what he says this next week when I see him.My Rheumy said the min dose should be 900mg but hey if I am getting results lower why up it yet ???

    Like I mentioned in earlier post..Rheumy on Mon....Neurologist on Tue....Cardiologist on Wed......and Friday is a new Lupus specialist !!!! By the end of next week I hope to be able to post some good info if I am still sane after all that..... The apointments just happened that way...YIKES !!!

    Be Well.......Have a nice weekend
    Kathi

     
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    Old 11-15-2003, 10:59 PM   #32
    snowmelts
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    Hello.
    I am new here.
    I have had mild Sensoral Axonal Peripherial Neuropathy (cause unknown) for over 10 years. I do take Neurontin.
    Noone ever mentioned any Rheumy to me. Can explain why you would see a Rheumy? What do they do? Why do they do it?

    Islandlady, I do hope you find your answers.

     
    Old 11-16-2003, 03:32 AM   #33
    islandlady
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    Snowmelts:

    I would guess to see if what you have is rheumatoid arthritis?? Don't really know, but I know that is one of the things they tested me for (I don't have it). I'm curious, since you may be me in 10 yrs (I was just recently diagnosed) - how are you? Have you suffered any disability (i.e need cane, wheelchair?) other than from pain? Mine is moving so fast. In less than 2 months I've gone from a vague sensation around the ankles to full-blown numb to past my knees and new spots elsewhere almost daily!
    I'd really appreciate any info, since it seems we can learn more from our own little network than from the doctors, at least about the nitty-gritty of what life is like with this "symptom" (almost wish it were a disease itself, with a cure!!).
    Thanks snowmelt!
    Islandlady

     
    Old 11-16-2003, 06:19 AM   #34
    Kathim
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    Rheumy... "Rheumatologist"

    Hi .........

    To answer your question about a rheumatologist.......

    They are a specialist who deals with anything autoimmune- arthritis type diseases such as.....sclerderma,lupus,myositis,sjorgen s,rheumatoid,osteo, and the list goes on.....
    A good rheumy will do extensive testing in the blood that other Doctors DO NOT !!!

    I had to become my own medical advocate and thank god I did otherwise I would still be sitting wondering evenmore than I am now because my other Drs just didnt give a hoot nor did they have the sense to refer ....

    Kathi

     
    Old 11-16-2003, 03:15 PM   #35
    snowmelts
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    Thanks for the information about a rheumatologist. No one has ever suggested I see one for any reason.

    NO I do not currently use a cane or walker or wheel chair.

    Gee, looks I get to post a list of all my aches & pains here.
    That's a whole book!!!!! Here goes.. but first I promise I'll never make such a long post again, just this once.. I promise.
    Age 56.
    Female.
    Sensory Axonal Peripheral Neuropathy. Cause unknown
    To answer the question of what Dr's did I see to get DX:
    It was in 93 maybe. I first went to Back Clinic and they did back X-rays and found nothing that could cause the problem and sent me to a Neurologist. They took a MRI (old fashion one in a long tunnel) on my body not my head. They did blood tests but I don't know which ones. He did some test using electrodes. That was it and so I got diagnosed.
    Pretty much the same gauntlet in 99 when I had to re-prove it to a diff state. But this new Neurologist had the prior Neurologistís letter explaining his diagnosis. New Dr. did blood tests and nice modern open MRI of my lower back area and leg. That was it. Same diagnosis. Axonal Peripheral Neuropathy.
    I never went through all this misdiagnosis and all these test many on this board have had to do.

    I am not a diabetic.


    It's currently in my right hip, leg and foot. Noone seems to know WHY I have it.
    It simply appeared in aproximately '93
    For the first 7 or 8 years that I had it I took Carbamazepherine (probably spelled wrong but it's Tegretol)) to control the pain/sensation.. and it worked fine but I became too, too exhausted & sleepy. Took sleep apnea tests at the hospital overnight and I did not have that. Neurologist suggested it was my Meds. So my med. was changed to Neurontin.
    I take Neurontin now, but I only need a total of 800 MG per day to control the pain/sensation "enough". I don't want to take more than absolutely necessary you know.
    Neurologists have never said to do anything to fix it..just take the pain masker... They have said there is no cure. They have said exercise did not make any diff either way. Since I do have a balance problem on that side because of the leg & foot the neurologist did say he recommends New Balance Shoes to help me maintain proper balance. But I didn't buy them because shoes covering the top of my foot, in the upper arch area naturally drive me insane.

    ~~~~~~~~
    PN Symptom history "How it felt in the beginning before any pain meds..:
    It is easy to remember the beginning.
    I was driving home from work and stopped at a stop light.. uuummm breaks didn't seem very firm. However the car was safely stopped. I began to watch the breaks.. they definately felt all..well.. not there.
    I took the car to the garage and they tested the breaks. Breaks were perfect. Nice firm breaks. Except my foot said they were squishy sloppy not there breaks. Car petals have never felt solid since then either. Then fairly soon after that started my feet fell asleep. Just the tingleing asleep feeling for days and they would NOT wake up.

    Of course that lead to electrifying pain very shortly thereafter. In my feet, legs and hip. Yet at the same time my feet were burning up they were also frozen. VERY hard to describe. Like burning, freezeing, electructed sweating feet. I used to joke that my foot was like a melting ice cube.. sweating wet but frozen. I was wearing wool socks in the middle of the summer in Florida!
    Ice cold but yet the skin felt sort of like it was crisp burning toast on the outside and numb inside. This is a very hard disability to describe isn't it?

    I'd come home from work and wrap my heating pad around my burning/numb/frozen feet (the right foot was bad but there was some in the bottom of the left foot too) and the right leg too. That heat did ease the pain. I'd sleep with the heating pad on my hurting hip. Rolled over one night and burned my tummy on the stupid heating pad!
    Somehow.. in the course of the 4 months it took to get a Diagnosis my fumbleing adventures in trying to ease the pain made it GO AWAY in the left foot and left hip area. But the right foot, leg and hip were terrible. I cold not even make the three toes on the right foot move at all.. the entire side of that foot was "dead" as far as muscles movement and balance was concerned.

    Ten years later I still very much have it in the right hip, leg and foot. When I switched from Tegratol (sp) to Neurontin a couple years ago I actually began to get movement in my foot. I spent the whole day just wiggleing my toes the first day it was possible. I was showing the grandkids I could move my toes.. they thought it was silly. I can now move all the toes freely up and bend them down at will!!!! By golly that's improvement isn't it? Though I still can't seperate the smallest toe and it's neighbor from each other. My foot, of course, feels all the tingly electric feeling when it touches the petal so I've sort of developed an awareness of the correct pressures to use.. but I still press too hard/fast sometimes on that break. I am very careful about when & where I choose to drive.

    You know I forgot about those heating pad days untill I typed this.. maybe I should wrap my right in heating pads again!

    Pain is controlled for the most part by Neurontin. But I take a low dose. just 200 MG's 4 x a day = 800 total so I still always tingly and like bugs creeping on my skin. Of course the car petals are still squisy things..but I do drive anyway on dry roads on low traffic hours.
    Shoes.. oh I hate socks and shoes.. they have to touch my skin! I don't want anything touching my skin. I don't step on things without getting sharp pain. I get leg cramps toe cramps. I find potassium tablets really do help the toe cramps. But no day passes without me taking my Neurontin on time.
    ~~~~~~~~~~~~~~~~~~~~~

    NOW in the last couple months I have had a very bad burning in the tip my left hand index finger.. like I burnt it, but I did not burn it and you can not see anything. I was assigned a new Primary care Dr by my ins so on the first visit I asked about this burning finger and she said "I think it's just a nerve problem" . well we had many things to discuss and it didn't sink in till I got home .. "I think it's just a nerve problem" OMG.. then for a couple weeks I'm getting the tingleing in my left arm..that cold creepy numb skin feeling.. left arm and left neck and up my left facial area. NOT pain.. just the "Creepies". This is what is promting me to finally look for ideas from others.. I think if a person is having a heart attack or stroke then pain is involved.. I have no pain when this happens just "numbing creepies" on your left arm and neck and face ..right???? Cold Creepy numbness that last one minute and leave. During that minute my arm is not obdiediant..it's more like a rubber arm (LOL) IS THIS MY PN SPREADING after all these years?????????? If so why am feeling it? I AM taking Neurontin. the cold numb creepy just happened again tonight.. it is so disconcerting and scary! But it only lasts a minute. DOES ANYONE HERE HAVE THIS SENSATION in the let arm and up the neck/face????


    ~~~~~~~~~~~~~~~~~~~
    I have other disabilities not related to PN. (At least no Dr. has suggested any relationship.) I have had most of these problems for ages. None of it is new.

    I have other disabilites not related to PN.
    *Sensorineural hearing loss (both ears)
    *Tinnitis.
    *Osteoarthritis (both knees, pelvic bone)
    *Misaligned knee bones (both knees)
    * Mild disk Bulgeing in the Lumbar Spine
    * Mild pulmonary fibrosis & emphysema
    *Allergies to artificial flavor & color as well as allergic to salicylates (can never take aspirin) and of plenty of natural items you eat, drink or breath.
    Allergies to many medications and environmental allergies includeing fumes/man-made fumes & scents.
    *Dry Eye syndrome.
    *de Quervain's Tenosynovitis ( a form of tendon problem) in both thumbs & wrists for which I have worn casts and I stretch my thumbs away from the hand to maintain this properly.
    *I also have what they used to call 'Seed' Callouses on the bottom of my feet. I'm seeing a podiatrist soon..but haven't for many years. If He calls it something other than Seed.. I'll edit again.




    SORRY for the long post.

    Last edited by snowmelts; 11-17-2003 at 07:49 PM.

     
    Old 11-16-2003, 04:12 PM   #36
    islandlady
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    Snow: Thanks for that description!! I'm going to print it to really review it, because you give very good descriptions of what I'm feeling. My only problem is I've developed it all in just the last few months, feet, legs, arms face, back. It's everywhere.. And your description of the hot but cold thing is perfect. I really am exhausted from trying to describe to all my friends, family and doctors what I'm feeling. It's not easy.
    Funny you mention the heating pad. One neurologist I saw told me about a 100 yr old treatment: You take two buckets of water - one very hot and one very cold. Stand in one for 3 min. and then switch to the other for 3 min. back and forth. He said it's supposed to stimulate the nerves and apparently works in some cases. I wonder if your heating pads weren't helping to stimulate regrowth of the nerves??? I'm going to put up a post on that and see if anyone has heard of it. Stay in touch! You're a goldmine of info!

     
    Old 11-16-2003, 04:20 PM   #37
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    Oh I'll be here for sure. I need boards like this very badly for moral support and to gain new knowledge. I am so glad to find others who understand.
    My family and people I know have no idea what this feels like. When it began I did not live in the same state with my family. All they see is I take a pill for "some thing" in my leg.

     
    Old 11-16-2003, 06:01 PM   #38
    Kathim
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    Lightbulb Dry Eye Syndrome!!!

    Snow melts !!!!!

    You mentioned Dry Eye syndrome.... is this how they diagnosed you or do you have Sjorjens Syndrome ???? It would be very interesting to know as that is something auto-immune......

    Sjorgens is actually dry eyes and mouth etc.......

    You definately have had a bad time of it.....I am not far behind !!!!!

    It is funny that island lady mentioned one pail of hot and one cold......this is what they did to me at the university before my EMG test that was so awful !!!!!!

    lets all keep i touch !!!!

     
    Old 11-16-2003, 06:40 PM   #39
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    My Dry Eye syndrome.... oh my.
    First time I got this DX was in the mid 90's. I was at work and my eyes just ached. Co-worker walked past my cubicle, looked and stopped and asked if everything was OK. I said sure. He replied that it looked like I had been crying? Well I hadn't. So I went and looked in a mirrow and my eyeball were all red!!
    I saw an Opthamalogist. (excuse the spelling) and she said it was Dry Eye Syndrom. She said it's not unusual at all for a woman in her later 40's to develope Dry Eyes during menopause.

    Then, living in another state, in spring of 2002 I began geting stabbing pain in my eyes and I looked and saw these little clear raised places on my eyeball like blisters. When to an Opthamalogist immediately the next day even though the bumps/blister had gone down (same Dr. I get my eyeglasses glasses from) and was told once again that it is Dry Eye Syndrom.

    I go through a whole 4 oz of Visene Tears every month now..
    Noone has ever bothered to suggest the Dry Eye problem was anything else.

    I never heard of Sjorjens Syndrome. But I defiantely don't have any dry mouth problems.

    Last edited by snowmelts; 11-17-2003 at 04:45 PM.

     
    Old 11-17-2003, 03:20 AM   #40
    islandlady
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    Dear Snow:
    I've had dry, red eyes (sometimes look like a vampire) for about 15 yrs. I've been checked, too, and was told to use "tears". Also use Visine when going out, almost as much to keep from scaring people as to look better.

     
    Old 11-17-2003, 04:54 PM   #41
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    Quote:
    Originally Posted by islandlady
    Dear Snow:
    I've had dry, red eyes (sometimes look like a vampire) for about 15 yrs. I've been checked, too, and was told to use "tears". Also use Visine when going out, almost as much to keep from scaring people as to look better.
    YEP, that Visine Tears works and you don't have to wait to be able to see when useing it. Visine tears is a "cost-efficient" clear liq drop.
    BUT there is an over-the-counter product that works better (BOTH the Dr's I saw told me about this one and I have used it sometimes) because it is thicker and when used before bed can "pamper" the eyeball overnight. It's called Celluvisc. It cost much more than Visine does. You CAN use it anytime, not just bedtime, but it takes maybe a few minutes minutes for your eyesight to see really clear after you put it in cuz after dropped in it acts like a lubricant salve rather than just a liquid tear. That's why the Dr said use it at night before bed and Visine Tears in the day.
    Celluvisc is VERY good,

    Last edited by snowmelts; 11-17-2003 at 04:58 PM.

     
    Old 11-18-2003, 01:57 PM   #42
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    Pn

    Hello again.

    Island lady, sorry to here you are still feeling anxious about the syndrome and that your symptoms are getting worse. If only I knew what was causing your symptoms (and many other peoples), i'd be running the busiest practice in the world! I too find the connection between the cholesterol and neuropathy a bit dubious. To me, it sounds like a guess.

    In anycase there are a couple things to add here. Doing the following can only benefit the nervous system, while you struggle to find a Dx

    1. Eat wholesome foods. Vegetables, fruit, brown rice etc and lots of water. No sugar (other from fruit), caffeine or additives. I personally believe this is the most important thing of all anyone can do.
    The gluten free diet might be worth a try, as already mentioned.
    2. Add some supplements, like the B group vitamins, ALA, Omega 3 (if you've had ciguatera, use flax oil), possibly magnesium, vit C, CoQ10, and plenty of bioflavaniods, such as blueberries, grape seed etc.
    3. Remove as much stress as possible. Say to yourself "I've had tests to rule out all illnesses that can kill me, and I can handle everything else". There is no doubt about it, stress makes the illness worse.
    4. Nobody likes to here this one, but here goes. Keep trying to find a plausable diagnosis, but you may have to accept the possibility that the technology available today is not yet able to detect all illnesses, and therefore may not be able to pinpoint the cause. (This was the hardest thing for me to accept).
    5. If using meds to relieve symptoms, then use the lowest possible dose.
    6. Keep moving!

    Sorry I can't help more. The eye symptoms doesn't surprise me. The optic nerve is the most used nerve in the body. If the nerves are damaged, then it's logical this nerve will be effected. Mine optic nerve is real bad. Vision very fuzzy.

    James

     
    Old 11-18-2003, 02:06 PM   #43
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    James:
    You have a wonderful way of organizing thoughts and de-stressing the situation. I really appreciate your message and will follow the advice.
    I still haven't gotten an answer to the "other" big question (other than: what is causing this???): will this put me in a wheelchair and/or take away my hands and arms??? That's what is really worrying me. I don't mind the pain, the numb, I can live with that and more. But my mom's in a wheelchair (stroke) and I know the pervasive effect it has on every aspect of your life. And I will even accept a wheelchair - but if I lose use of my arms I think I'd be suicidal! That's what's really, really scaring me! Any advice?

     
    Old 11-19-2003, 01:57 PM   #44
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    IL, I understand your concern. At one point, I too was really scared about this. But lets look at this logically. Death to nerve cells comes usually up clear on an MRI, as you see the scarring. There are a few exceptions to this, but they are mainly cognitive disorders, like Alzheimers or CJD, which is hard to Dx with an MRI. Ciguatera won't show up on a MRI either. If the damage is axonal, axons regrow.

    Now your MRI was negative, and remember this is a very strong test. This rules out scarring as there were no lesions (thank goodness). Now I can't remember if you had a nerve conduction study. (ie the study where you get electrodes on your legs and arms, get a bit of an electric shock to measure conductivity). If this was normal, then your nerves are firing normally, it's just that somewhere in your brain, your usual perception of normality is registering incorrectly. If you haven't had this simple test done, you might like to do it, as it may make you feel more positive and less worried.

    Based on this, and from the tests you've had done, to me it sounds logical that you won't end up in a wheelchair. I just can't see how you could end up in one.

    Remember, just because your symptoms feel worse, it doesn't mean this illness itself is getting worse. It's time to relax a bit and give yourself a break!

    The most likely bet is a toxic, bacterial or viral invasion, which in most cases are impossible to identify (there are millions of possibilities there), and are usually self limiting. You'll get over this IL, and you'll be a better person for it.

    I hope this eases your concerns,

    James

     
    Old 11-19-2003, 02:16 PM   #45
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    James:
    I did have an EMG (the nerve conduction tests with the little electric jolts) and it did show "some acute denervation in the left foot muscles". But what worries me is that, since I had that test about 5 wks ago, I've had drastic changes - it's gone from just one ankle (the left foot) and a little, tiny bit in my right ankle, to total
    numbness, tingling all the way over both knees, and odd cold/hot sensations in my back, neck, face, scalp. Also pains in tops, backs of legs and other spots that vary.
    I may go for more tests next month to see what's going on. But your theory about a toxin or virus makes so much more sense than some of the stuff I've been told (like it's my high cholesterol "suddenly" after 20 yrs causing all this in a matter of weeks).
    I'm calming down a little more, thanks to your good thoughts, so thank you! And again, I admire the amount of research you must have done on this condition. You seem to have a pretty comprehensive sense of what's going on.
    Thanks!!

     
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