[Konzy]

Hi all,

Not even sure why I'm posting as I'm resigned to not being able to get any help or recognition for my symptoms (the medical system, not people on here! Everyone has been quite helpful in the past).

I have had neuropathy symptoms for close to 2 years and they are declining quite rapidly. Im almost unable to work and it is a desk job. I have all the sensory symptoms, numbness, tingling, burning, weakness, and also am now experiencing problems with moving my limbs at all so walking and anything with my hands. Ice cold arms and fingers even in summer. My face also feels numb and even swallowing and my tongue feels affected. There is a toxicity component to my illness which is difficult for anyone to understand, let alone an orthodox neurologist.

I finally went to a neurologist about 6 weeks ago and described my symptoms in good detail. He did a full physical workup. He didn't think anything was wrong and only ordered an MRI 'just to be sure'. The MRI (head and spine) came back with no issues. I have been checked for diabetes. B12 I'm not entirely sure but I seem unable to tolerate tablets anyway, i just feel wired on quarter of the lowest dose tablet, sublingual. Gluten free etc.

I didn't ask for a nerve conduction study or skin biopsy and he didn't mention it at all. I was reluctant to mention it as he may have been annoyed at me asking for a particular test. I'm now regretting that decision. Given how difficult it was to get that appointment, the chance of getting a second opinion before being palmed off onto anti-depressants or a psychiatrist are slim.

Im from the UK, so would welcome some UK based input. I literally don't know what to do. At the age of 29 I'm almost unable to work. Nothing has been 'diagnosed'. The speed at which I appear to be deteriorating is a major concern. I have no family support or partner.

Do doctors respond to letters? Would it be worth trying to send a letter to the neurologist or his secretary and phrasing something like 'in light of continued worsening symptoms, i feel that an EMG would be a beneficial investigation'. Even that would probably alarm them and feel that I'm on the way to crazy town. I'm fully aware treatment options are limited at best, especially if parathesia is the prominent symptom. I could 'cope' with sensory symptoms in my hands and legs but with it now being felt in my head, and feeling like my legs are stuck in mud, I'm at my wits end.

Any advice would be much appreciated. Please excuse the vent!

[Pixel22]

It can be difficult to work when you have PN. I found just getting ready for work some days was a full time job in itself! Rather than a letter, maybe just give them a call. Tell them that you would like to schedule the additional tests and they will likely have the doctor call you back. Have everything written down so you can be prepared when he/she returns your call.

[KatLC]

I don't think asking for an emg will make them think you're crazy. Over the years I have learned you have to be really persistent when you know something is wrong but doctors don't figure out a diagnosis right away.

I'm not from the UK so I don't know what would be the best way to approach this. If you can't get an appointment to see another neurologist soon maybe you should go to the ER? Either way don't give up, insist that they continue to do tests until they find out whats wrong.

[Prabby]

Hi konzy,

I am a newbie here.No expert,just advice.It seems you have two issues.The one regarding your symptoms and the other about getting to talk to your neurologist again.Readings your symptoms,it seems you have both peripheral and autonomic neuropathy.Good news is that your mri and checkup were normal.I would suggest to get your vit D and calcium levels checked.Your neuro should have asked for it,that's what mine did.You say you are from uk,you guys never get enough sunshine over there for vit d and no food has enough vit d.So,I am guessing your vit d levels must be low.Vit d should help with these classical symptoms of pn. About your ice cold hands,that's probably because of poor blood circulation.You might have noticed your veins in the hand are not dilated enough.I had the same problem.It is something very similar to Raynaud's phenomenon.My vit d were very low once.(7.7) After I got them to 45 after 3 months,my veins in the hand remain dilated and as a result now they are never cold,except when the temperature is low.If vit d doesn't solve this one,just ask your doc for a vasodilator,your blood will keep your hands warm.

I don't think you have any disease, severe or permanent nerve damage.

You don't have family support or partner,so I can imagine how horrible you must be feeling.

I don't think it's a good idea about sending letters.If I were you in the same scenario,i would go to another neurologist.Also,please have an emg and NCV to rule out any other complications.Keep popping b12 and other B-complex vitamins.Your auto nerve problems should slowly fade away.Hell, the other peripheral issues can take years to heal,as my neuro told me

[Konzy]

Thanks all,

Hi Pixel - It's almost impossible to speak to a specialist doctor here unless you have a diagnosis and are a patient. Typically you get referred back to your GP, who you can speak to at any time but who wouldn't be able to schedule specialist tests.

I may try speaking to his secretary and asking for her advice. Unfortunately they can be as blunt and unhelpful as doctors.

Thanks KatLC - I'm not quite at the stage of needing to go to the ER. If i did I would get discharged immediately. Even if I lost the ability to walk I think I would drag myself somehow to my GP in the first instance. If I lose the ability to use my arms then yes, straight to the ER.

Neuropathy was not mentioned at all during the consultation, either by me or the doctor. I refrained from mentioning it due to not wishing to impose my view although I was aware of it. Im not very persistent and sometimes feel I'm ignored as a result.

Will have a think

[Dr. Smith]

Originally Posted by Konzy

I didn't ask for a nerve conduction study or skin biopsy and he didn't mention it at all. I was reluctant to mention it as he may have been annoyed at me asking for a particular test. I'm now regretting that decision.

Hi Konzy,

IME, some doctors can be hard to read regarding their openness to patients' proactivity. Some respond positively that the patient is taking a more active role in their care, but some are threatened by it, feeling their knowledge/authority is being challenged.

Sometimes it can be a matter of semantics. Rather than asking for any particular test, you might ask the doctor's opinion about having/ordering xxx test. This would be less challenging to the doctor's skill/ego, yet still initiate the conversation. It can be followed up with why/why not questions, or asking about alternatives/plans.

Regarding letters, many doctors now have/use online portals in which patients can request records, prescriptions, ask questions, schedule appointments, etc. This kind of thing they'll usually respond to, or have their staff respond to. Again, it may be a matter or semantics/wording.

Doc