Numbness and tingling: another update for friends with same issues

[Ciar]

Hello to everyone concerned with neuropathy symptoms. I had an appointment with a neurologist/physiatrist last week to do a more comprehensive nerve conduction study and an EMG. This doctor has been reluctant to diagnose peripheral neuropathy, and I feel fortunate to have had the extensive tests to be sure of the diagnosis. He tested both legs/feet and my right arm/hand. In the end he said the results do not indicate that I have peripheral neuropathy. I do have significant carpal tunnel syndrome in my left hand and mildly in my right that account for the numb and tingling hands and arms.. He also said arm and hand symptoms are not due to cervical spinal problems (MRI shows 3 cervical disks pressing “moderately” on my spinal cord). He also said that a ganglion cyst in my right ankle has caused nerve damage resulting in numbness and nerve symptoms there, and that pain in my left foot is due to musculoskeletal issues. I’ll get sent back to orthopedics for more treatment, possibly to remove the cyst and I don’t know what for my left foot/ankle.

I still have plenty of unexplained tingling in my legs and pelvic girdle area and my left foot. All these nerve issues popped up right about the same time as PMR. Maybe my internist will help me decode the results of these tests more...I don’t know. During my last appointment we argued about my prednisone dosage. I had increased back to 6 1/2 mg because, as usual, my PMR symptoms were becoming difficult after reducing to 4 mg. She was unhappy with that and argued I need to keep reducing regardless...that everyone with PMR says that, then suggested substituting methotrexate. I said I would rather take my chances with side effects from low dose prednisone, the 6.5 mg does work. My appointment ended just after she told me I can’t have neck surgery while I’m taking any prednisone. I don’t want neck surgery, and 2 specialists have said it’s not appropriate for me at this time. She agrees I should put it off as long as possible. I left with the realization that I have another doctor who doesn’t seem to believe in treating my PMR. I have already dumped my rheumatologist for that. We have a doctor shortage here and it’s not a big town. I can’t just keep looking for new doctors. This is such a big problem for me.

[SheffieldJane]

Bullying! Sigh, thank goodness you are informed and assertive.

It just shows how complex our pains and symptoms are when properly investigated.

Not that you want it, but the surgery advice varies from surgical team to surgical team.

[Ciar in reply to SheffieldJane]

She called herself a “steroid nazi”. I have a tough fight on my hands. I have 3 opinions about the surgery. Each is different. One says don’t do surgery. One says remove one disk and fuse. One says take 2 different disks and fuse, but wait until it’s unbearable. I don’t have any neck and shoulder pain when I’m taking 6.5 mg prednisone.

[PMRpro Ambassador in reply to Ciar]

6.5mg pred and no surgery sounds preferable to me - it is a physiological dose and surgery ALWAYS carries risks. Surgery makes more money for them though...

I wouldn't wish to be treated by a "nazi" of any shape or form - but it would be interesting to know why they bother starting to treat PMR with pred and then try to stop the only thing that makes life bearable. And why there is such a lot of stuff in the literature about managing the pain of PMR - after all they are/were quick enough to dish out opiate painkillers which don't work in PMR.

[Ciar in reply to PMRpro]

Yes, you’re right. She would rather have me on tricyclic antidepressants and low dose opiates (which didn’t work) than low dose prednisone. I would change doctors again, but given the shortage here and that I already did that, I think I would get more trouble. I have seen 2 rheumatologists and 2 “GPs” and they all think the treatment for PMR is start with low dose Prednisone and drop1 mg per month, then you’re cured. (I was down to 2 mg last winter after only 10 months of treatment, and very ill though my blood tests were still ok). She allowed me to go back to 7 mg last winter and change the taper to 0.5 mg per month only when I asked. More fighting needed!

[PMRpro Ambassador in reply to Ciar]

TCAs and opiates DO NOT WORK FOR PMR!! It isn't fibromyalgia or any other structural problem - it is INFLAMMATORY in nature.

For goodness sake - if you make a diagnosis of the disorder for which the MAINSTAY is pred (as stated in ALL the medical literature), then use it. If you don't want to use it - don't make that diagnosis in the first place. Which makes you a bad doctor I'm afraid.

Sorry for shouting...

[Hidden]

Well... I am happy it may not be neuropathy (of any kind) after all. That is good news. Did they definitively rule out Small Fibre (Nerve) Neuropathy? My EMG results said mine wasn't Peripheral neuropathy, but the Consultant who actually administered the test, said all that means is that there is no "measurable damage to the peripheral nerves or the peripheral nerve coverings." He is the one who actually said my symptoms indicated, I should be referred to a Neurologist for further tests; my Rheumy had sent me a letter saying "...the EMG results were normal, this is very reassuring." Hahahahaha! Maybe "reassuring" to HER! My feet were still numb, tingling painful and had pins and needles!!!!

I hope your Internist can help and direct you. I may not be reading and comprehending fully, but it sounds like there are some unanswered questions... (?) You are closer than where you were before though... that's GOOD!

Yes, it sounds like you may need to gear up for conversation about steroid reduction... they are so damn quick to get us on this shit and then when we are experiencing good results they want to take us off!

Good luck Ciar... it is a minefield! I hope you make it through to the other side with minimal damage! I am right behind you!!!!! xx

[Ciar in reply to Hidden]

I think this means that these tests don’t indicate neuropathy...maybe just this doctor’s interpretation. I haven’t had the biopsy for small fiber. What further tests would they do for you? You sound like me...but what about all this tingling and zapping that really seems like it could only be nerve problems. I have the exact symptoms for Baxter’s nerve entrapment (per several internet sites) in my left foot...where this neurologist says I have a musculoskeletal issue. Plus so much tingling everywhere, I’d really like to think I’m out of trouble, but I’m not sure. I’m very interested to hear what tests happens next for you...I hope it’s good!

[Joaclp in reply to Ciar]

Hello Ciar. I haven't answered so far because it seemed sensible to let you pursue treatment of the separate problems that were identified. I have had neuropathy for over 4 years and it has gotten much worse in the last year, even disabling. Only the most recent of 4 neurologists has decided to do skin and nerve biopsies. I did, like you, have different interpretations of past nerve conduction tests as well as actual changes in the tests over time. Now there are clear examples of both myelinated and demyelinated nerves with damage. The last dr is looking at a slew of conditions, such as fibromyalgia, vasculitis, Sjögrens, degenerative disc disease and more. I also, like you, was told in the past I had carpal tunnel. The new neuro thinks there is a unifying explanation to all my neurological symptoms, and there are many. My point being what? I guess that things got so bad for me that I became more aggressive, more proactive, in search of answers. My main question in the recent appointment was can you find an explanation for my neuropathy and thus a treatment that will help symptoms and stop progression? Not sure I have an answer yet but at least no demeaning bucket diagnosis either. If you want more info, I'm here.

JoA

[Ciar in reply to Joaclp]

Thanks, JoA. I am interested to know what has happened with you. It sounds like you’ve been through it all! 4 neurologists, repeat testing, different diagnoses, wow. At this point in my journey I can see myself going in a similar direction and it is scary. I wonder if I should ask for the biopsies. Was that a difficult test? Meanwhile I have to struggle with my doctor over my prednisone dose, and try to get referrals in a mostly rural area with few specialists and a general doctor shortage.

[Joaclp in reply to Ciar]

A few questions for you. I think you are in rural Idaho: can you go to a doctor in a big city? Can you see a new rheumatologist if not a new neurologist? I saw many neurologists because they were associated with different clinics I went to for different reasons and treatments: migraine, pain management, RA. The new dr is because I moved from Los Angeles to Virginia. Here in VA I had to see a physiatrist before I could be rereferred higher up.The many diseases considered as causal are because I have prior conditions and diagnoses and they may or may not be the causes of neuropathy. My symptoms are severe now: burning, numbness, tingling, electrical shocks on both sides, in feet , legs, and up to groin, some in hands and forearms. Trouble sleeping due to nerve pain. I also have a wierd sort of muscle locking paralysis in arch, calf and knee. The nerve tests etc finally showed both sensory and muscular neuropathy. If conduction test is positive, they do biopsies of skin nerves and sural nerve. I am also on medications, mainly Gabapentin at a high dose. Finally I may have autonomic involvement based on symptoms of difficulty urinating, certain groin pain, and inability to sweat. If I can help you or clarify things, let me know. By the way, there isn't much in the way of treatment for most neuropathic conditions. All the best, Ciar. JoAnne

[Ciar in reply to Joaclp]

I was seen most recently by a neurologist at the university hospital in Portland, OR. It is very difficult for me to get there, but I have family there to stay with. A new rheumatologist would be welcome, but there is such a shortage in our region, I will probably have to wait. I will ask my doctor for another referral. I have similar problems, but thankfully I don’t have much pain from this yet. I can see where it can easily become disabling. I have read that inflammatory conditions such as RA are considered causal, but they never mention PMR. It’s scary the treatment is lacking.

[Joaclp in reply to Ciar]

I don't know if this will be of any comfort but many people with PMR on this forum have written about limited neuro symptoms in feet. Some seem related to pred, some think it is PMR. Often it does not progress and even goes away. Mine was mainly numbness in left foot and then right for 3 years. Then suddenly it was firecrackers fall 2017. My frustration with doctors began then. Perhaps if yours gets worse you will have established credibility by seeing drs now. It seems most important to get support for your PMR right now. I wish your internist was more open-minded. One other thought. Do you have cervical stenosis? My new neuro was more interested in my neck MRI than in my lumbar area, contrary to ther docs who are trying explain muscle problems. Good luck. I feel for you. JoA

[Ciar in reply to Joaclp]

I just pm’d you regarding this, but yes I have significant cervical stenosis. I don’t know how much my recent neurologist looked at my MRI before he did the testing, but it is in my files. I feel for you too!

[Lanakay in reply to Joaclp]

Since last Thanksgiving I have experienced some swelling periodically and some numbness in my left foot. Not all the time though. It is also my left knee that is the worst.

[PMRpro Ambassador in reply to Lanakay]

Has it been investigated?

[MaryA_]

Wow, so much for you to go through! Has you PCP checked your vitamin D or megnesium levels. Sometimes if one or both are low can cause the tingling in lower body. My PCP’s office called n said mine were low n told me what amount to take. He will recheck with blood work again in 6 weeks It’s associated with being. On prednisone. It’s all so darn complicated! 🧐🧐

[Ciar in reply to MaryA_]

I did get lots of blood tests and they ruled out these things and vitamin B12, etc. Thanks for thinking of that.

[PMRpro Ambassador]

You are in the US - can your GP equivalent not provide the scripts and the monitoring? To me she sounds as if she has a set agenda and stuff the patient - she didn't appear to listen at all. Never mind the bullying.

If methotrexate SUBSTITUTED for pred they would use it. They don't - because it doesn't.

[Ciar]

She is my GP equivalent, I wish I had someone else as back up. In the US we used to call these docs GPS, then they became family docs, internists, primary care docs, etc, lol. I still have to bring the articles to her and I have already printed them, so more arguing ahead... she is stubborn. The takeaway is simply that they don’t believe in treating PMR.

[SheffieldJane]

She is stubborn. You are informed, resilient and strong with a virtual army who have got your back.

[Ciar in reply to SheffieldJane]

Thanks for the moral support, Jane!

[Telian]

How awful, it's one thing fighting symptoms and getting a correct diagnosis but how do you zap a stubborn doctor I'd like to know! Keep strong and hope things work out for you soon.