Aa
Thanks for your comments and support. I think what I'm going to do is find another neurologist, and also take the Alpha Lipoic Acid. I cannot believe the neurologist said I had other symptoms of other things too, and yet, he told me at this time he wanted me to try yet another medication before he would even consider test for Lyme or MRI, etc. Here I am with my muscles twitching, and miserable, and he wants me to try another drug, that he has no idea what he is even treating.
I hope the Alpha Lipoic acid works for you! My recollection is that I started to notice effects after a few weeks, so be sure to give it some time....
I feel for you! The epileptic drug(s) you mentioned are anti-convulsants as you know. I tried them too for this neuropathy. Neurontin actually seemed to make the burning worse and I was on and off it for different lengths of time. And I NEVER did get past the dizziness when taking it. My Neuro then tried Lyrica. Again, same thing, plus it seemed to stop working and also gave me muscle cramps in my legs. Then she had me to try Cymbalta. I got severe dizziness from it too. Finally, she tried Xanax but because I didn't want to take 2-3 pills a day, she eventually switched me to Klonopin. I know, it is a benzo and people frown on taking them. But Klonopin was a life saver for me. I take only one .5 a day (actually I cut it in half; 1/2 in the morning, 1/2 at night). It really took the burning down and is also an anti-convulsant and treats anxiety too. It really helped to treat the symptoms anyway. I am suprised your neuro didn't run the tests such as an EMG or QST. Maybe he or she has their reasons that I don't know about. Anyway, a Neuro here told me that this is awfully difficult to treat as we know. I want to try to the alpha lipoic acid too but won't right away. I am hesitant to take or try anything until sometime after surgery. Also, a couple of my docs mentioned that I might have radiculopathy going on instead of neuropathy but we shall see. Hang in there. This PN stuff can be rough. :)
Oh, and I asked my neurologist to do a test for Lyme. I printed everything off, to show I have all the symptoms. I never had a bite that I could recall, or any rash, but with all the symptoms being the same as Lyme, I went into armed with the information. I thought if I could show the neurologist the possibility -- well, you guessed it -- he would not do the test.
Thanks also from me on the info on Alpha Lipoic Acid. I went to GNC today and bought a bottle -- 300 mg, so plan on taking 2 a day.
I just got back from the neurologist who for the second time did absolutely nothing for me. He prescribed again, something more for epileptic seizures. That's not what I have. I asked for an MRI. I've asked for the nerve tests. He keeps telling me I have to try drugs first. First was Topomax, I quit taking it, caused head pains -- then today he puts me on Trileptal. I looked it up on internet when I got home. I have no intentin of getting it filled either. This quivering and shaking of muscles is very scary, and it's not seizures once in a while, it's continuous. So, I'm going to try Alpha Lipoic Acid, figured it's gotta be better than these drugs. I also have problems taking any medications or vitamins because of stomach upset. I plan on taking with small amount of food, etc. Thanks for the info, and hopefully it will help.
I just got back from the neurologist who for the second time did absolutely nothing for me. He prescribed again, something more for epileptic seizures. That's not what I have. I asked for an MRI. I've asked for the nerve tests. He keeps telling me I have to try drugs first. First was Topomax, I quit taking it, caused head pains -- then today he puts me on Trileptal. I looked it up on internet when I got home. I have no intentin of getting it filled either. This quivering and shaking of muscles is very scary, and it's not seizures once in a while, it's continuous. So, I'm going to try Alpha Lipoic Acid, figured it's gotta be better than these drugs. I also have problems taking any medications or vitamins because of stomach upset. I plan on taking with small amount of food, etc. Thanks for the info, and hopefully it will help.
I have had the foot and hand tingling problem for 10 years. Finally I went through every possible test at two famous medical centers, and all doctors could conclude is that I had "small-fiber neuropathy" that was likely the result of a mild virus. One of the nation's leading specialists in neuropathy told me to start taking 600 mg. of the amino acid "alpha lipoic acid" in divided doses (I take 300 mg., twice a day), which I buy at GNC vitamin stores. And it really, really works! I hardly feel the tingling pain at all when I take it regularly. So you might try it while you're looking for answers, as alpha lipoic acid has no side effects, and it can't hurt you. Good luck!
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you describe are odd (the pulsing hand part) but, anyone with isolated numbness of the extremities deserves a workup for MS (multiple sclerosis). Unfortunately, many people with real MS are passed off for years as "anxious" (and some other patients pursue the diagnosis of MS despite exhaustive testing). You should have a comprehensive workup for MS, so that you can know the truth (as we know it) and you can continue with your life. I would recommend a MRI of the Brain and C-spine with contrast. Based on the results of this test you may need further testing. Sometimes an MRI is sufficient to diagnose MS. If not, you should have a lumbar puncture to look for inflammation (Tourtelotte panel/IgG index, oligoclonal bands) and visual/somatosensory evoked potentials. MS cannot be diagnosed by any "blood test". MS is a chronic disease and has many implications that cause anxiety, the sooner you get the workup you will know if you need disease modifying treatment or to pursue another diagnosis.
I hope this has been helpful.
The symptoms that you describe are odd (the pulsing hand part) but, anyone with isolated numbness of the extremities deserves a workup for MS (multiple sclerosis). Unfortunately, many people with real MS are passed off for years as "anxious" (and some other patients pursue the diagnosis of MS despite exhaustive testing). You should have a comprehensive workup for MS, so that you can know the truth (as we know it) and you can continue with your life. I would recommend a MRI of the Brain and C-spine with contrast. Based on the results of this test you may need further testing. Sometimes an MRI is sufficient to diagnose MS. If not, you should have a lumbar puncture to look for inflammation (Tourtelotte panel/IgG index, oligoclonal bands) and visual/somatosensory evoked potentials. MS cannot be diagnosed by any "blood test". MS is a chronic disease and has many implications that cause anxiety, the sooner you get the workup you will know if you need disease modifying treatment or to pursue another diagnosis.
I hope this has been helpful.
Thanks! I will do some research on it. And I don't have diabetes either. The small fiber PN is gone in my hands now but still bothers my feet and ankles. Other than taking one .5 Klonopin a day I usually use Biofreeze to take the burning down and help me get to sleep. Also, it seems the heat and humidity makes thing so much worse. So, I hate the summers and love the winter. :) Oh, and I don't recall having a virus at all. Actually, I was feeling pretty good after the first fusion (second one scheduled this week)then all of a sudden the burning started out of the blue in the palms of my hands and the top of my feet. Anyway, thank you again.
Thank you! I was so glad to see someone that has seen a top doctor for the small fiber PN. I have been diagnosed with it as well and have had extensive testing...all negative results. I currently take Klonopin which works pretty well. But I was wondering about the alpha lipoic acid. You said it has no side effects. But can it interfere with other meds? And does it upset your stomach at all. I am very sensitive to all meds and vitamins and such can just tear my stomach up. Anyway, mine came on about 6 months after a cervical fusion. Yet, my Neurologist says that the PN is independent of the fusion. So, if the alpha lipoic acid works, I might just try it. Can you go into more detail as to what it is and how it works. Thanks!
I'd like to see more maybe a little more expansion on the Alpha Lipoic Acid also. I think I may go buy some and try it. I'm am the point I'll try anything herbal or vitamin-like for the tingling and twitching. Gosh, it's so nice to see somebody write something they have tried, that has helped. Thanks.
In response to the last 2 posts: not being a physician, I really don't know how or why alpha lipoic acid works. But if you google "neuropathy" and "alpha lipoic acid" you will find more than 90,000 references. The medical studies have mostly been done on diabetic small-fiber neuropathy (I do not have diabetes); I was told by one neurologist that it is easiest to find a group of diabetics to test rather than people like me who have some unknown virus as a cause. But the tingling and pain of small-fiber neuropathy is the same no matter what the cause. I was told by several neurologists that the body excretes any excess alpha lipoic acid just like it would extra vitamin C. But be sure to take 600 mg. and give it a few weeks to start working. Although I'm prone to g.i. side effects, I've had no problems at all. Also, my 90 year old aunt is now taking it for a different type of neuropathy that affected her balance; after several months, she has noticed a great improvement in her symptoms. If you want to check with a doctor first, I suggest you talk directly to a neurologist--and preferably a specialist in peripheral neuropahty--as an internist probably doesn't know of alpha lipoic acid.
If you guys want to look further into Lyme disease there are some awesome sites you can go to.
If you are in the sates go to lymenet.com or if you are in canada go to canlyme.com.
Check them out and see if you fit the profiles of Lyme. There are also some very helpfull people that can help you find a proper doctor.
Good luck,
Lesley
If you are in the sates go to lymenet.com or if you are in canada go to canlyme.com.
Check them out and see if you fit the profiles of Lyme. There are also some very helpfull people that can help you find a proper doctor.
Good luck,
Lesley
Sorry one more question...
When I do see my doc in october, any practical tips on how to approach lyme with him? I don't think he'll just prescribe me a pretty strong antibiotic based on my comments alone (haha) especially if he doesn't know much about it which I gather (from reading the net) that 99.9% of doctors don't.
When I do see my doc in october, any practical tips on how to approach lyme with him? I don't think he'll just prescribe me a pretty strong antibiotic based on my comments alone (haha) especially if he doesn't know much about it which I gather (from reading the net) that 99.9% of doctors don't.
Hi,
Was wondering if we could touch base a little and discuss Lyme. I am being treated for Lyme and just started my second anti-biotic...would love to run some stuff by you. I have read your posts and you sound very familiar.
At any rate if you get a chance a would appreciate the opportunity to pick your brain.
email: ***@****
Thanks,
Lesley
Was wondering if we could touch base a little and discuss Lyme. I am being treated for Lyme and just started my second anti-biotic...would love to run some stuff by you. I have read your posts and you sound very familiar.
At any rate if you get a chance a would appreciate the opportunity to pick your brain.
email: ***@****
Thanks,
Lesley
Thanks for the further info and comments on lyme. I appreciate the help.
My problem though is not that I don't want to consider the possibility of lyme, but rather the difficulty I have seeing any specialist I want to given that I am part of an HMO and very, very financially limited (grad student).
As I mentioned before, I've seen my internal medicine dr on a number of occassions and he is just proceeding cautiously. I even called him a couple of times to reiterate the "tingling" issue and he just ran some more blood tests and said to wait until our appointment in Oct (I'll mention lyme to him as well then). At that point though, I'm also really going to push him for a referral to a neurologist who I hope will be willing to check me out more from that angle (i.e. mri, etc). Obviously given the option and financial ability, I'd love to be able to go to any specialist I want, fly to see a LLMD paying out-of-pocket, but just don't have that ability right now so have to take it a step at a time.
Regarding the depression symptoms though (sleep, energy, etc), I have to admit that the simplest explanation is really not lyme. When all those things started in Feb, I had just come off a series of major stressors (I could literally feel myself totally burnt out). I actually have repeatedly asked the professionals treating that area if this all could be the result of some disease -- and they say they really, really doubt it -- that this is a pretty textbook case of how someone slips into clinical depression. Also, I recently had a dosage increase in the antidepressant I take and about the last week or so have really started telling the difference.
Again though, it would really be good to investigate this stuff from other angles as well (i.e. lyme), but just have no choice but to take it step-by-step....i guess it helps that I have been feeling alot better too in the last week or so.
Thanks again
My problem though is not that I don't want to consider the possibility of lyme, but rather the difficulty I have seeing any specialist I want to given that I am part of an HMO and very, very financially limited (grad student).
As I mentioned before, I've seen my internal medicine dr on a number of occassions and he is just proceeding cautiously. I even called him a couple of times to reiterate the "tingling" issue and he just ran some more blood tests and said to wait until our appointment in Oct (I'll mention lyme to him as well then). At that point though, I'm also really going to push him for a referral to a neurologist who I hope will be willing to check me out more from that angle (i.e. mri, etc). Obviously given the option and financial ability, I'd love to be able to go to any specialist I want, fly to see a LLMD paying out-of-pocket, but just don't have that ability right now so have to take it a step at a time.
Regarding the depression symptoms though (sleep, energy, etc), I have to admit that the simplest explanation is really not lyme. When all those things started in Feb, I had just come off a series of major stressors (I could literally feel myself totally burnt out). I actually have repeatedly asked the professionals treating that area if this all could be the result of some disease -- and they say they really, really doubt it -- that this is a pretty textbook case of how someone slips into clinical depression. Also, I recently had a dosage increase in the antidepressant I take and about the last week or so have really started telling the difference.
Again though, it would really be good to investigate this stuff from other angles as well (i.e. lyme), but just have no choice but to take it step-by-step....i guess it helps that I have been feeling alot better too in the last week or so.
Thanks again
I agree with you, I'm getting tested through IgeneX after more than 2 months trying to get a doctor signature for it. The problem are the doctors that don't have a clue and don't care about what you think (they think we are nuts). How come I can't have an exam done that I'm paying for it because my insurance won't cover it??
Also, it's really hard to get a LLMD close to your area, and when you can there's a HUGE wait for it... I think we have to fight too much, and in a moment we are so fragil, where we can't even think straight...
But I think people like you is needed, to let a bug in our minds to pursue the right dx, even if it is not Lyme,
Thanks for your time, really appreciated.
Also, it's really hard to get a LLMD close to your area, and when you can there's a HUGE wait for it... I think we have to fight too much, and in a moment we are so fragil, where we can't even think straight...
But I think people like you is needed, to let a bug in our minds to pursue the right dx, even if it is not Lyme,
Thanks for your time, really appreciated.
Thanks for your feedback. I was just wondering because like you I'm taking atenolol for my blood pressure/fast heart rate. Why are you taking a beta blocker? If it's only for blood pressure, there are a lot of meds that have less side effects... (I've changed a couple of times, it's why I know). My dr wants to slow down my heart rate... The side effects (you prabably know), are difficulties to sleep, nightmares, depression (more frequent in males).
About seeing a neuro, I honestly think for your peace of mind you should talk to a good neuro (to me it was hard to find). Keep asking your PCP for a referral, at one point he will give it.
I live close by a few University hospitals, and was really happy with the doctor and everybody that I had to deal with. Also, I had a few exams and I got the bill in a month I had many unnusual expanses, so I called to see if I could pay a few days later, and I was surprised that I could make monthly payments without interest through my credicard. I'm sure that you can find a place like that.
Good luck! :)
About seeing a neuro, I honestly think for your peace of mind you should talk to a good neuro (to me it was hard to find). Keep asking your PCP for a referral, at one point he will give it.
I live close by a few University hospitals, and was really happy with the doctor and everybody that I had to deal with. Also, I had a few exams and I got the bill in a month I had many unnusual expanses, so I called to see if I could pay a few days later, and I was surprised that I could make monthly payments without interest through my credicard. I'm sure that you can find a place like that.
Good luck! :)
You know its funny you should bring up the bp issue. I actually hand the tingling well before all this other stuff happened in late feb/march. Its only when this other stuff started happening that I got myself to a doctor, found out my bp was elevated and started atenolol. As time went on however, I went to a different doctor who thought it must be the atenolol causing all these problems and asked me to stop (obvoiusly didn't work and I was put back on it).
Basically, I think "wisdom" would tell me to just go with the advice of the professionals I've seen and asked many questions to. They've told me its very obvious that most of these physical symptoms (sleep, energy) are from depression and the tingling is not related. But when you're a young guy like I am and been laid aside this long, it's hard not to get a little antsy and impatient.
Anyways...wish ya well on discovering the cause of your symptoms.
Basically, I think "wisdom" would tell me to just go with the advice of the professionals I've seen and asked many questions to. They've told me its very obvious that most of these physical symptoms (sleep, energy) are from depression and the tingling is not related. But when you're a young guy like I am and been laid aside this long, it's hard not to get a little antsy and impatient.
Anyways...wish ya well on discovering the cause of your symptoms.
Sorry for your problems...
I was curious, did your symptoms started after you start you blood pressure medicine?
I am having neurological issues (tingling, paresthesias, fatigue) for about 1,5 year, and everything started after I started taking my BP meds...
Good luck!
I was curious, did your symptoms started after you start you blood pressure medicine?
I am having neurological issues (tingling, paresthesias, fatigue) for about 1,5 year, and everything started after I started taking my BP meds...
Good luck!
Thanks for the comment...it's good talking with people facing similar struggles. Regarding the atenolol though, I doubt if its contributing to these problems (sleep, low energy, etc). I actually had the problems about 2 months prior to when I started the atenolol (tried a diuretic first). Then after about a month on the atenolol, I stopped taking it for 2 months and the problems were still there.
Also, my dose is really, really low (only 12.5...just half of one of those little tabs). I take it for the blood pressure, but my bp is kinda weird. For instance, when I check it at home its always fine, but when I check it at the grocery store or dr's office..it always goes up alot. I mentioned that to my my dr and even showed him the records I keep at home, but he still wanted me on it. He said it was really high at his office and I'm probably just alot more comfortable at home.
Finally, I was aware of the side effects of atenolol, but understand they are pretty rare. I read somewhere that atenolol was actually designed to replace a drug (Propa something) which had alot higher rates of depression, nightmares, etc in people because it crosses the blood-brain barrier. Atenolol supposedly does not cross taht barrier. Again though, who knows what these drugs do in different people? We're all different...
Thx again
Also, my dose is really, really low (only 12.5...just half of one of those little tabs). I take it for the blood pressure, but my bp is kinda weird. For instance, when I check it at home its always fine, but when I check it at the grocery store or dr's office..it always goes up alot. I mentioned that to my my dr and even showed him the records I keep at home, but he still wanted me on it. He said it was really high at his office and I'm probably just alot more comfortable at home.
Finally, I was aware of the side effects of atenolol, but understand they are pretty rare. I read somewhere that atenolol was actually designed to replace a drug (Propa something) which had alot higher rates of depression, nightmares, etc in people because it crosses the blood-brain barrier. Atenolol supposedly does not cross taht barrier. Again though, who knows what these drugs do in different people? We're all different...
Thx again
You are reading content posted in the Neurology Forum
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
