P.s

[Nackapan]

The neurologist has discharged me! Saying b12 damage and post concussion disorder? Only solid test result is b12 defiency. His answerve to dealing with my symptoms was tiny give on 50mg amitriptyline. To shut meye up presumably

[fbirder]

Amitriptyline is commonly prescribed for neuropathic pain - at a lower dose than that used for depression.

[Nackapan in reply to fbirder]

Yes I know! I trialed it. Took 10mg to help prevent migrains and calm brain . It helps some . I was dissapointed after resIsting for months that it didn't help me as was too drugged to function at all. I'm glad it helps some. That why my post was asking g for other things to try as still struggling

[Nackapan in reply to fbirder]

My first post below

[Ashbe]

Are there any neurologists who are actually helpful?

I first saw myself ne in 2017, he ordered tests. I’m still waiting for some!

Anyway his standard response to my G P is that he’s waiting on tests!

In meantime I’ve been given a few “ lists try” drugs. Amitryptiline was one ,messed with my head! Latest and by far the worst was Pregabalin.

Coming off it was really bad. So now I just do with out. I no longer work,live alone so when I can’t sleep at night I will eventually sleep sometime.

So never ask me what time it is, or to make plans . I just cope as best I can.

Anyway latest situation re tests. Last week I received a letter asking if I still wanted to remain on list! Had to laugh as the stated that they are common tied to reducing their waiting lists!

[fbirder in reply to Ashbe]

"Are there any neurologists who are actually helpful?"

Absolutely.

The first neurologist I saw, at the local hospital, ruled out any obvious causes for my neuropathy (B12 and diabetes), but had no idea what might be causing it. So he got me referred to an expert at the National Hospital for Neurology and Neurosurgery in London.

He ordered a batch of blood tests, nerve conduction and electromyography. After a couple of hours he declared that he didn't know what the cause was - by that he was pretty sure what it was. He said that idiopathic axonal neuropathy was fairly common in very tall men in their late 50s. I was 195 cm and aged 59. He then went on to predict how it would progress and asked me to see him again in six months. Sure enough, nine months later (it was difficult to get an appointment I could easily get to London for) he ran most of the tests again and his prediction had been correct.

When I asked him about taking alpha lipoic acid to help with the pain (alongside gabapentin, which has been a life-changer) he knew all about it and told me it couldn't hurt and might help.

So I've had two neurologists who have been very good.

[Ashbe in reply to fbirder]

Glad to hear it . I think I need to go back to my GP and ask him to refer me somewhere else.

[Nackapan in reply to fbirder]

Good for you. The National has a good reputation .Not all get all the tests needed. It's getting the right referral to an interrated neurologist.

[Nackapan in reply to Ashbe]

Oh goodness. I'm not on any drugs at present either. B12 and hoping for improvement. All very isolating. I can't work either. I don't live alone though. I wish you well