Neurologist Questions
 

Hello Group,

My condition is worsening and becoming a whole body pain and numbness, but I still remain grateful for the life I had. I saw a Neurologist recently. It is easy to second guess what happened, but I thought this information would be helpful for the group. Below are questions I had for the Neurologist.

Is Vitamin B12 essential to nerve health, if yes why?

Is Vitamin D essential to nerve health, if yes why?

Can Statins cause nerve damage?

Does the Cholesterol in the body create Myelin?

I have the diagnoses of low B12 and Low D. The excess weight causes diabetes and I am responsible for that, but the vitamin deficiencies perhaps should have been discovered with more regular testing, in my opinion. I asked for a B12 test about 7-8 years ago and it was very low. I have been supplementing since. Should I have been tested more often considering I had nerve pain before treating the diabetes twenty years ago? Some of my levels may have been low for some time.

I have been diabetic for 20 years and it is now in control. I am 61 years old.

The very day I was diagnosed, I got a prescription for Metformin and Statins.

He said Metformin won't cause low B12. But B12 is important for nerve health.

He said low D would not cause nerve damage.

He said Statins do not cause nerve damage.

Some Cholesterol is needed for nerve tissue.

He said the feet and hands are neuropathy, but the rest of it is Fibromyalgia. It feels the same to me. He says they don't know the cause of Fibromyalgia.

He says water exercise is the most important thing now. Nothing has helped me.

He thinks about once a year testing for B12.

He really would not comment on whether I should have been tested more often. But B12 and D only got low because I was not being tested.

I have done the research and it was well presented, but I can't prove anything and don't need to. I am thinking about future patients. He has a medical degree and I don't.

That's all for now and thank you.

Fibro is inflammatory disease. I have both fibro and neuropathy. Similar. I don't have diabetes. Feet/lower legs fingers neuropathy and now fibro all over. Arthritis as well. Joint pain, bone pain. Warm water therapy sounds good around now!!

I had sudden onset of low VitD in the past 9 months. Turned out to be a Parathyroid problem. (I highly suspect it was triggered by something). Vit D shouldn't just go low out of the blue.

How's your Serum Calcium do you have that tested?

Sorry for your pain. I feel it too. Middle of the night here and it's keeping me up every night lately.

I'm not a doctor. I'm just a patient but I can't say I find what your Neurologist told you very factual if you don't mind my saying and that's just talking about the D.

Just curious so have added on here - It's great that you were able to get your Diabetes under control. Have you tried an anti-inflammatory diet at all over the years?

I am not sure about Serum Calcium, but good blood work won't change much anymore. I am also sorry about your pain. The water therapy feels good while doing it, but there no long term solutions, I have discovered. I believe my questions were valid. I understand his reasons for his answers.

What statin are you taking, what dose, how long have you been taking it?
What was your cholesterol numbers before any med?
We have some older threads on stations and lipitor specifically if you want to explore those.. they may be many yrs ago....

I think lipitor played a part in my chronic RSI and now fibro also.

Statins
 

A Statin for about 20 years. I don't remember in what order, Lovastatin, then Simvastatin, then Pravastatin40mg, and now Atorvastatin20mg.
If I knew they could cause this, I would have taken my chances with a heart attack. I don't know who to believe now. I believe the doctor knows more that he would admit to. But business is business and that it more crucial for profit that what may be right for the patient. But I understand the reasons for it all. I had some nerve damage before treating diabetes. I think total Cholesterol over 250 to start. 6 months ago my Triglycerides were 400 and now about 150. Still very grateful for my life experiences. I have no proof that is what happened, but I am looking for answers. His answers were not believable.

JKPHOTO,
When I read your first post, I was worried that you totally accepted what your Neurologist told you.

You asked him good questions but the answers you were given seem to go against everything I understand to be so.

You're so young really. You don't have to accept what you've been told especially if you are already sceptical. I wouldn't like to tell you to do something against doctor's orders but I'm not really understanding his orders to begin with. Hopefully some of the other forum members here will join in with advice because I'm a relative newbie to PN.

Back 5 yrs ago or so there was a new study out that statins are not the fix all and that many did not need to be taking them..

Pubmed.com has many studies and related info..

The gist of it was, if you had actual heart issues or past heart problems or strong family history of heart problems.. then might be worth taking statins..
But not only based on a silly number..

Any Dr that stays updated on new info should know that information..

in 2003 or so my # was 350 and trigl was quite high - I took Lipitor per Dr plus that was the thing to do back then...:(
i got blurry vision, dumb as a post,forgot how to spell simple words and forgot many things... plus multiple RSI injuries during that same time frame...coincidence?

After off work due to RSIs I had time to start reading online about RSI and Lipitor complaints.. So I stopped taking it on my own after talking with the pharmacist.
I started getting my brain back & vision cleared up to normal after a short time.
Still have some RSI /fibro type stuff but I can manage it.
If Dr does my blood work I tell them I'm not taking any statins even if numbers are still high.
I do eat a lot less junk and mor healthy choices now.

My brothers all take statins but none take lipitor that I know of..

Jomar,
As you would know, the forum is filled with many posts from people who had problems similar to that. The New Members forum has a lot. Many are from early days when the forum started so some of the links sadly no longer work, but there is a lot of info if we use the search engine for "statins". More up in the PN tips etc. Some on NeuroMuscular and more.

I was looking for a good thread from the past to link -
https://www.neurotalk.org/medication...hlight=statins

i second what others are saying about statins. It's not just lipitor which causes neurological problems like PN but crestor and others too.

Low vitamin D is not good for your body in general never mind just peripheral neuropathy.

i would be very skeptical about the diagnosis of peripheral neuropathy being in the feet and hands only and the rest is fibromyalgia. What testing did he do on the rest of your body that came to that conclusion? Did you have EMG/NCS to diagnose peripheral neuropathy in your feet and hands?

It is a good thing to get second and even third opinions from experts in the field.

Hi JKPHOTO,

I've been taking Lipitor for many years and had no side effects. The dosage is only 10 mg/day though. The doctor felt that I should get by with as low a dose as possible, and that reduced dosage of 10mg instead of the usual 20 has been enough to keep the cholesterol under control.

He did and EMG a few years ago and he called it mild to moderate PN. It was really not mild then, and truly not mild now. My provider says Fibromyalgia is diagnosed by symptoms, and they don't have a test. But there is test:
FM/a Test, and I can get through a Naturopathic Doctor but they don't take insurance and my provider does not offer it.
The cost is $1080 and it won't change what I have.

My synopsis is: Initially a diabetic neuropathy possibly complicated by:

Statins?
Low B12 from Metformin?
Lack of testing of B12 and D and probably other things?
Perhaps some alcohol while young?
Being diabetic for a while, before treating, then treating it with drugs that are neurotoxic?

I never wanted to say I was not responsible, but when I ask questions, I want more accurate answers. If the doctor does not know these things, they should. It is how big business works. CYA. And it is pointless to try to inform them of things because they resent it and will not accept that I know things since it makes them uncomfortable.

If I had controlled by weight better when young, I probably not be diabetic and:

Not needed Statins
Not needed Metformin
Not drank alcohol
And did my research many years ago.

But it did not happen that way.

In addition, I have tried many alternative treatment and spent a great deal of money. My insurance does not cover any treatment outside of their system. So it will continue to get worse for the rest of my life, in my opinion.


I would be very skeptical about the diagnosis of peripheral neuropathy being in the feet and hands only and the rest is fibromyalgia. What testing did he do on the rest of your body that came to that conclusion? Did you have EMG/NCS to diagnose peripheral neuropathy in your feet and hands?

I have heard a little bit about anti-inflammatory diet but I am not an expert.
I have given up on actually getting better since it never has stopped getting worse and seems to spread rapidly. My diet is not perfect, but not terrible either. Fruits, berries and vegetables, 5x a week, and chicken and fish 2x a week. Low Carb for sugar issues. Some legumes and beans for soup. I really don't intend to seek outside second and third opinions since it just evaporates money quickly.
So the only think I would do, is to try that since it cost nothing except for the cost of food. Haven given up on getting better, my duty now is to inform people what happened and to try and prevent it for others.


Just curious so have added on here - It's great that you were able to get your Diabetes under control. Have you tried an anti-inflammatory diet at all over the years?[/QUOTE]

You mention whole body pain and numbness. I have no numbness with my muscle issues. I have numbness with my peripheral neuropathy.

I would find the results from when you had your last blood test.
I'd find my Vit D levels, my Serum Calcium levels and B12.
As always, please correct me if I'm wrong - In the USA Serum Calcium should be 8.5 to 10.9 mg/dl. (Au measure differently i.e. 2.1 and 2.5 millimoles per litre (mmol/L) )

Low Vitamin D can cause an enormous array of symptoms all over the body. It controls calcium levels in the blood and we need good levels for bones, muscles and general good health. BUT, it's a fine line. Too much is not good. Too little is not good. It is so under rated. Plus a lot of the symptoms of Fibromyalgia are similar to symptoms of low Vitamin D/low or high calcium. Then there's also Polymyalgia. I see a lot of literature around that says that Fibromyalgia does't cause inflammation whereas Polymyalgia does. That isn't how my doctors see it but maybe they're wrong I don't know. I'm on a treatment for melanoma that actually causes inflammation in doing its job so in my case it's the constant inflammation that's caused the fibro... long story.

Do you get low grade fever?

Fibromyalgia also shows up as an enormous array of symptoms all over the body. It doesn't just show up as muscle pain. It affects sleep. I always get asked if I feel less tired after I sleep. No never. It causes sleep disturbance and when we wake up we don't feel rested. So you're dealing with fatigue, sleep problems, muscle pain, cognitive dysfunction and a heap of other problems.

What is Fibromyalgia – Fibromyalgia Australia

There are so many health issues that affect our nerves and muscles. Sometimes we have several conditions at the same time. Sometimes it's more simple than that. My PN started as an overnight reaction - neuropathy in feet and lower legs - to a cancer treatment that I was on for only 10 days and ended up in a very bad way. I know exactly where my neuropathy starts and stops. For me it sounds more simple than for you and yet I have this overlap with cancer treatment being inflammatory, low vit D, slightly higher than normal calcium = parathyroid problem.

Don't blame yourself. Try to keep things simple, start with your last regular blood tests. Get a copy if you can.

Start by ruling things out yourself.

If your B12 is good, rule that out.
If your Vit D levels are acceptable, rule that out.
If your Serum Calcium is good, that's great you can rule that out too.

Think about getting another opinion. You need some answers and there's a lot going on. You can't resign yourself completely. There are treatments for some of the things mentioned above. If you find that there actually is no treatment for whatever is ailing you then at least you know and can move forward with adaptations to your lifestyle and try to get some aids for sleeping and pain relief and other things at the same time. I've had to adapt to using a wheelchair when I go out yet at home I use a ride-on mower to mow the grass on an acreage. I now have to use pain relief. It's a balance.

It's called quality of life.

[can't speak to statins as I have no personal experience except for the 20 plus years of reading from forum members here and another place].

I think you may have more endurance and courage than I, but these are very good suggestions. I think most are my labs are close to be inline. But I have had these low levels for a while since they were not being taken at all or not often enough. I can get extensive labs from the Naturopathic Doctor. Labs $200.00, Doctor $200.00, Blood Draw $60.00. Better labs won't bring back the nerves or stop the pain of a rapidly spreading full body Poly Neuropathy. So your suggestion of just adapting is real the only solution, and the anti-inflammatory diet. I think some of my doctors are saying that they know less than really do and thinking I know less than I really do.

I feel lab numbers are only a base guideline.
There are such things as therapeutic doses of vitamin & supplements.
When you are unwell or in decline the theory is you need extra amounts to boost and get back to health..
I'm not saying just go crazy and take a bunch of stuff, but do your own research - maybe on alternative but reliable websites..
The ones just selling $$$ products are usually suspect so avoid them unless they really check out as legit.

Do you feel like you really have fibromyalgia after reading many places and the symptoms?
There are related and overlapping conditions..

I have some Fibromyalgia (FM symptoms but some don't fit for me..
There is also myofascial pain syndrome (MPS) they overlap a lot..
Some MPS symptoms fir for me too..
Getting the correct dx can be very helpful for best care & treatment..or self care..

You can list out your symptoms if you want and we can see how they fit compared to what we have.


I'll just list a few ideas... that have worked for me.. For RSI, Fibro, MPS...

If you have trigger points in your muscles those can be treated quite easily even on your own..
Trigger points are different form tender points, I have both.
Tender points are not the correct way to dx Fibro as many non fibro have them also..

Sore muscles - Epsom salt lotion , gels, bath soaks or magnesium or Cal /Mag supplements can help..
Interferential current (IFC) (much better than TENS) might help.. under 100.00 on Amazon.
Far infra red heating pad might help.. I had one since 2004 still works great. Goes deeper to the cells than plain heat pad..
MSM supplement - good for whole body
Methylsulfonylmethane: Applications and Safety of a Novel Dietary Supplement - PMC

If you have specific painful spots try to find a chiro or PT with a soft laser..
mine had one and it worked so fast 20-30 seconds pain gone..
Sometimes is confused with LED light therapy devices.. they work also but takes 30 minutes and more often..

20 year ago I went to a Neuropathy specialist in Virginia. Topamax he said regrows nerves. borage oil, Alpha Lipoic. Extensive testing. Nothing happened. I tried Sanexas and it did not work for me. I tried Hyperbaric Oxygen Therapy, and it did not work. GSE, ALA, Primrose Oil, Fish Oil, Benfotiamine. Chiropractic Neuropathy Specialist, Gentle Exercise, Gabapentin, Lyrica, Low Dose Naltrexone, Oxytocin (the love hormone) and acupuncture. The line I get whenever I don't get results is: You are just not responding to treatment. Some patients will say I am living with the condition, but I sort of feel like I am dying from the condition. It often feels like torture since it moves around and I never know where it will hit next, but it will, and it never stops getting worse.

My condition has just been a revenue source for many years with various practitioners. Now the symptoms are stabbing pains in much of my lower body into the abdomen, thighs, buttocks, back, hands and arms and groin. It started in my feet 20 years ago and about 3 years ago started spreading rapidly up the body. My blood sugar has been pretty good lately, but while younger, not so.

As mentioned before, it is my goal to educate people on all this. When I had my appointment with the Neurologist, he denied that any of my questions had any validity. To say now that it is Fibromyalgia and we don't know what causes it, is too simplistic and not realistic, in my opinion.

Now my PCP is saying I should go to therapy...

I'm glad you're talking about it with us all. It's so important. How on earth do you all pay so much for all your tests and doctors? I am always so shocked to hear how much it costs. It must be so soul destroying.

I tell you what though, if I didn't live where I live and get blood tests free, scans free etc.. if I'd had to pay for what's gone on with me in the past 5 years, I'd be long gone. I feel very fortunate in that regard but I did pay my taxes all my life and that's where it's helping me now I guess.

Many of us have tried so many things. I've read your posts and seen the suggestions that you've been given and what has helped a little and what has not helped at all. Sometimes I feel as if it's throwing money down the drain and because we're all so different nothing works for all of us.

We all don't have hundreds of dollars a week to keep trying different products for our neuropathy and what's being done to help? So many people have this condition now and need help. It's getting worse and worse.

Also, when I said about the blood test results that if they're ok then to rule them out. I didn't mean stop taking your Vit D or your B12 etc.. I meant that if for example your Vit D is fine these days and Calcium in the blood is fine, then at least you know that they're not actually causing some of your pain, because believe me, low VitD and Calcium/Phosphate issues in the Parathyroid loop can cause all sorts of terrible pain.

I get asked just about every month if I want to speak with "someone" hint hint. I laugh about it now, but they do mean a Psychologist and I understand their value totally but no amount of therapy is going to fix this mess.

Anyway, I'm really sorry you're in so much pain but am pleased you're talking about it more openly now. I know it helps me sometimes even if it feels hard to open up.

One thing I do is I keep moving. I obviously can't all the time, but on good days I push the limits. Always have and the endorphin boost I get from pushing the limits when I do is what keeps me going some times.

I go through a boxes of magnesium. Epsom salts and oral (I can't take calcium). I can't afford some things I'd like to try.

I did work for many years and have a disability income. I am also grateful for having healthcare, although not perfect, it is very helpful for many things. I have tried for so long and tried so many different things that it has become exhausting. Not even to mention the pain. I supposed I just mentioned it.

Have you used acupuncture for pain at all? Maybe it's too painful. I don't know.

I would have tried it if I knew it would help with pain relief although I don't have private health insurance anymore so would need to join up again for Extras.

Maybe Jomar or others have tried it at some time? I wonder if the soft laser uses the same meridians.

I have used acupuncture during the initial stages of the condition. It seemed to help a little. Then I stopped since Doctor Of Oriental Medicine wanted me to come in 3 times a week. That was about $1000.00 a month, so I stopped. I started up recently and after 10 sessions stopped as I felt it was not working.

I considered acupuncture but haven't tried any yet
I have done self acupressure at times
I'm a bit of a do it yourself person, so I explore those things first, unless something requires seeing a Dr .

I'm curious about those with a fibro diagnosis.
Are your muscles or skin painful when touched?
Or am I reading that symptom wrong?

I don't have that but nearly all other fibro sx, but most do overlap with the MPS, and I do have the RSI injury connection to fit with MPS..
I did take way too much Advil/Motrin while trying to keep working with RSI pain. I feel that messed up my gut health..

I have severe Allodynia turning into painful numbness. I don't feel as though I have muscle pain unless I work out for hours, so no . It seems to be very progressive now and unstoppable. Gabapentin does not really work very well. I use Cymbalta for depression and nerve pain and I don't believe that has been helping much for either. I have had nerve pain for many years and I know what it feels like. I am not sure that the Fibromyalgia diagnoses is accurate. It is just another word for what I have, nerve damage, and a lot of it. I feel that all of the efforts I made was being negated by the drugs I have been taking, then there was a problem. And I assure you, the things I have been doing have not been There is really no way to really find out exactly what occurred. But I would like some admittance that some of these possibilities were relevant, but I don't think I will ever get it. That is the frustrating part. Thank you for listening to my rant. I am glad that this thread has gathered so much attention.

I understand your frustration about not getting answers to your questions about possible causes or exacerbations. It took 17 years to find out the cause for my peripheral neuropathy which was sarcoidosis caused by toxic exposures. I knew it was the toxic exposures that were the cause but not the sarcoidosis being the actual mechanism of damage.

Central Sensitization

from Institute for Chronic Pain

Jomar, There are too many overlaps for me due to my Immunotherapy treatment (my Immune System is pushed into overdrive) affecting bones, joints, muscles, bladder, bowels etc. I also have had many of the symptoms listed for fibro syndrome long before I started this treatment though (Also things like kyphosis, Carpel Tunnel). So who knows. When do side effects from one thing become a whole new condition?

I don't fit all criteria for FMS either (e.g. cortisol. Never had a problem. Gets checked every 6 weeks) but it is a syndrome and it does change around all the time and not all people will have the same. Mostly my muscles feel as if they're torn or ripped. That's the best way for me to describe it but it's so complicated by all my other pain. have many other symptoms too of course but they can also be attributed to other conditions. I do not have allodynia. Ido have tender points just before some of the joints especially at wrists and in back, shoulder area but it's complicated these days as the pain heightens just by moving.

I do have hyperalgesia in my PN areas but I also have numbness in those areas as well. Hard to explain having sharp, sharp pain like knives but at the same time having numbness.

- If you have PN all over body then that's very hard to sort out. As I said earlier, I know where my PN starts and stops. It's almost a line. I do not have neuropathy all over my body. I would be feeling sceptical about your fibro diagnosis as well, JKPHOTO.

- In a general practice setting, it would be usual for doctors to ask a patient they have diagnosed with Fibromyalgia if they'd like to see a Psychologist. I get asked in the Oncology setting. Stress and anxiety and depression are common in these painful conditions. I make a joke about it but I do understand the need for relaxation techniques and perhaps CBT and more to help deal with pain.

I feel a need to discuss this further with the doctors. But if I come across as too annoying or a complainer, could they terminate my care? So this is what bring me back to this site. To discuss what could have caused all of this damage and pain. But somethings are still going to remain a mystery.

Doctors can indeed terminate your care. I've heard of doctors who have fired patients. They wouldn't say that the reason was that the patient was too annoying or a complainer, and that probably wouldn't be the entire reason. They do sometimes take patients to task if the patients aren't "compliant"--if they don't follow the recommendations the doctor has given.

This is usually stated somewhat like this: "If you're not going to use the treatments I've recommended, what is the point in continuing to see me?" They make it sound as if it's you who have fired them.

A good doctor (IMO) wouldn't go this route unless the recommended treatments were the only option and the patient's life depended on having those treatments. Even then, a strong case can be made for a doctor who cares enough about the patient to respect the patient's wishes and continue to deal with the issues that the patient brings in.

I can't imagine a doctor telling a patient that he/she is too annoying or a complainer though. After all, it's in the doctor's interest to keep patients, not drop them. Most doctors in my experience make an effort to follow the patient's lead, and they are usually very familiar with complainers and patients who can be annoying.