Neurologist said "it's not PN, its Neuropathic symptoms"???
 

Well its been over a year now since my symptoms started. I have seen my neurologist 3 times and finally he said to me last week "we have ruled out the big things i.e. nerve impingement of the spinal roots, spinal cancer, auto immune and hormonal issues. I don't think you have PN but neuropathic symptoms". What I don't understand is that surely the Neuropathic symptoms i.e. burning, pins and needles and altered skin sensations of sandpaper of my skin, (Sensor Neuropathy) are a part of PN. I am really lost and don't know what to do now. All blood tests came back normal with the ANA detected with Titre 1:160 which I will be retested again in May. The symptoms fluctuate day to day, and I try to manage them without any medication (the Neurologist gave me Endep for burning which I didn't take).
For the last few months I have use different supplements i.e. R-Lipoic Acid, Vit B5, Multi Vitamins, Indoplex, CO-Q10, Vit D3. I have stopped using Magnesium a few weeks ago as I have been struggling with a metal taste on my tongue. This symptom has improved but not gone completely. I was so pleased TO come off Micardis 40 mg daily in December however, I had to start again 10 days ago as my Blood pressure had increased on average to 150/85. I think the BP increase was caused by not taking the oral Magnesium (I continued to use the Morton Epsom Lotion though). The last few days my symptoms seemed to worsen, because of Micardis?? (i take 20 mg now). I am thinking to stop the Micardis to see if the symptoms improve? Last night I just broke down with fear and a sense of hopelessness…. what else can I do?

Yu Ping (first name)

I am sorry I can not really help except that I wanted to tell you my experience with Micardis. I got deep deep muscle pains, to the point I finally could not hardly walk. It moved around, thigh, calf, arm, etc and took me awhile to realize it was micardis. It IS listed as a minor side effect and major side effect RARELY. Anyway, if you notice muscle pains, it could be micardis.

Hope you find some help soon.

Hi Yu Ping,

A metallic taste is a common side effect of medications/supplements (e.g. too much D3). Checking side effects of the meds/supplements you're taking should give you an idea of possible culprits. But it can also be an indicator of other things, especially if it doesn't resolve completely. I would mention it to my doctor.

FWIW, Endep=amitriptyline. I take a very low dose (10 mg) at bedtime to help sleeping with chronic pain. I've had no problems, but everyone is different.

Doc

yupings,
I am sorry for your hopelessness. Don't hang around there too long. You might try some other medications, such as tramadol, gabapentin, Cymbalta. Also evening primrose oil helps me, or borage oil is similar but doesn't help me as well for whatever reason. Have you tried naproxen (Aleve) over-the-counter?
Ron

did you get a full work up for small fiber neuropathy? did you have an EMG/NCS done to check for large fiber sensory and/or motor neuropathy?

Hi Yu Ping,
Has your doctor suggested a skin biopsy to diagnose small fiber neuropathy? It isn't a bad test to go through and may give you the answer you are looking for. I am also curious whether you have had an EMG/NCS as echoes posted. If your doctor has not done this testing, I would suggest you request he order them.

It sounds like you are reluctant to take medications and I agree. It is a difficult decision to make. I just hope you are not suffering needlessly when there out some treatments out there that may help alleviate some of your pain.

Hang in there it took most of us a few years to get our diagnosis.

Hopeful

Hi Stacy,

Thank you for your reply. I was so happy when I stopped the Micardis back in December and I even shared this good news with Mrs. D and now I have to go back on it - really disappointed.

I remember you also have BP issue, what medication do you take?

Hi Doc,

Yes I did mention it to my Neurologist, hence he sent me to have SE-Rheumatoid Factor, SE-C-Reactive protein, SE-Angiotensin Conv Enz, SE-ANA Virtual and SE-ENA Virtual tests to rule out Sjogren's Disease, Systematic Lupus and other auto immune problems. I check the side effects of the supplements I took and found too much magnesium can cause metallic taste but didn't realise Vit D3 can also cause it. I take 2000 IU daily, is this too much? Interestingly my symptoms tend to worsen as the day goes on, so morning is the best for me, hardly any symptoms.

I know I am stubborn but will now consider taking Endep if necessary. Thank you for taking the time to provide support, really appreciate it. Yu Ping

Hi Ron,

Thank you for your caring words. No I won't stay in this place too long, but just give me few days then I will climb out of it. Sometimes i just want to curl up in a ball and emote. I am out of the pit (for now). There are a lot of grief and loss issues with this journey. I am not what I used to be, the things I used to enjoy to do and to accept this new me takes lots of letting go and acceptance. I really now appreciate my elderly clients when they talk about their sorrow of losing bodily function and mental alertness. It is about losing control and learning to surrender. I try to tell myself "I am more than this disease. I am still me with a clipped wing".

No I don't take any medications you mentioned but now will consider them if necessary. Thank you again. Take care of yourself. Yu Ping

Hi Echoes long ago,

Yes I had the usual full blood tests but not for small fiber neuropathy. The Neurologist doesn't believe I have PN but only "Neuropathic symptoms", so go figure…… The large finer sensory test came back normal. I am seeing my GP in 2 weeks, I will talk to her as to where to go from here. Thank you for your reply. Yu Ping

Hi Hopeful,

No skin biopsy for small fibre neuropathy because the Neurologist doesn't believe I have PN but neuropathic symptoms…. The NCS test was normal and no EMG test was order. However, my neurologist did use a small sharp pins to poke me all over. After many "ouches" and some "moaning and groaning", he declared I am normal.

I understand what you said about suffering needlessly, I will try to live in the present, and take the medication when necessary, rather than worry about what side effects and addictiveness of the medication. Thank you. Yu Ping

i would see another neurologist and get another opinion

Exactly what Echoes said!!

I also ditto what the others have said. Get another opinion. If your neurologist is a good doctor he will not mind you doing that.

I hope you get some answers!

I agree with the others.

Hi Kit,

I really like the saying - "It is what it is, it's not what it was, it's not what it could have been, it is what it is". I often say this to myself and it helps a lot. Thank you

:Wave-Hello: It is so true for me. And for many others. :Thanx:

I do not think switching nerologist is that easy, at least not for me. You have to be referred for your insurance and my dr referred me to the one I am with and it is not going to be easy to switch. I hate that insurance and medical industry makes everything so dang hard. :(

But if you can switch I agree.

i never had a problem getting a referral for a second or even third opinion.

Most insurances have provisions for second opinions. Shouldn't be too hard.

Hi Yu Ping,

I may be able to explain why you may not have PN but neuropathic symptoms, what your Neurologist may mean by that.

Like you, my blood work, MRI, Neuropathist testings, etc. etc. have all come back negative. According to my Neurologist I do not have PN and she has no further need to see me. However, I have the symptoms, big time! I'm currently on Lyrica and Tramadol to control the pain.

What I'm trying now is a gluten-free diet. Since starting, many symptoms I've had most of my life have vanished, most within the first week or two. My Gynocologist (she is more open to ideas than the silly Neurologist) agrees that decades of ingesting gluten unaware that I'm intolerant has quite likely been the cause of the nerve damage.

So, there is one example of how I don't have PN, but as a result of a lifetime of gluten abuse I am now suffering from neuropathic symptoms.

Perhaps consider seeing a Naturopath or Dietician to investigate possible underlying allergic causes.

In the meantime, consider the pain medication. It's a temporary measure to give quality of life. I strongly believe that the stress our bodies are put through when in a painful situation can effect such things as blood pressure. How can our body heal if it's constantly responding to pain? But, that is just my belief and each to their own. I hope you get your answers soon.

Warm hug

Debbie

keep in mind that damage has to be to the large myelinated fibers and there has to be nerve damage to a certain extent to be detected by an electro myograpy (emg) or nerve conduction study (ncs). even though you have symptoms you may not have enough actual damage yet for it to be detected.
the same applies to tests for small fiber damage including skin biopsy. there has to be a certain amount of damage in percent tiles to confirm small fiber neuropathy. there have been quite a few people who have posted here who were negative in these tests, only to turn positive when retested at a later date.

Hi Debbie,

Thank you for giving me your experience. Yes, I did see a Naturopath last year when I decided to deal with my PN from a nutritional perspective. She did order an Iron blood test which came back normal and suggested some supplements to support my thyroid, hypertension and insomnia. I don't think she has a lot of experience in PN though.

I also started a Gluten free diet (not-so-strict) since beginning of this year. I don't normally eat a lot of pasta and bread. We also now make up our own GF porridge. What I really find it hard with the GF diet is to have gluten free sauces i.e. soy sauce, gravy and powder stock etc… I am having a blood test in 2 weeks to check gluten intolerance and my GP asked me to stop the GF diet for the time being to get an accurate reading. I haven't detected any worsening symptoms since I stopped the GF diet last Wed.

I understand the lifestyle does affect our health and it is interesting to note that most of the PN suffers are in their 4th and 5th decade of life. It says so much of the environmental issues and food we put into our body which overwhelms our "ageing" bodies. One of thing I noticed while reading through this site is many of people who have PN also have some kind of spinal problems. I too have a spinal issue, that makes me wonder if the previous injury somehow triggers the PN even though you are not experiencing any pain from your original injury (spine)????

Yes I am now more accepting and prepared to take medication if necessary to give me body a break from pain.

Thank you for sharing your thoughts with me. Yu Ping