Waste of time neurologist visit! Ugh...

Sooooo as I’ve posted before I’ve had chronic undiagnosed muscle pains for over ten years now, gradually worsening with each year... and anytime approached a doc I was told to have more water and sleep more til I stopped asking. Massage helped but has reached a point it just doesn’t last and I can’t afford the amount of massages I’d need...

Finally have a doc that cares, so once got my stomach troubles officially diagnosed as IBS (mixed), I asked him what he’d suggest to try and diagnose these muscle issues that’s clearly not normal. He referred me to see a neurologist. Which was great! Managed to get in the next day due to a cancellation anddddd...

Gotta say it was a hella waste of $150.

Half hour appointment. I could of had a 1.5hr massage for that costs! Would of been more beneficial.

Got in, filled out the forms, explained what’s been going on and what’s been suggested before... He got me to sit and move my arms a little, tell him where it was sore, poked my back and shoulders a little then sat back down...seemed to think a moment (and by the way, he’s only taken about two lines of notes this whole time so far with all the info I’ve given him...)

And then looks at me and says he reckoned I had Dystonia. Started talking something bout neutrons and dopemine and some other brain stuff that made no sense but sounded smart. Have me a script for some meds to try and said if they fail...next step was Botox injections into the muscles.

For me that was an immediate ‘oh hell no!’ thought. So paid and went in my way, but had this nagging thought in my head so when got home read up more on what Dystonia was and in sounds NOTHING like what I’ve got except the ‘muscle pain’ part. I don’t get spasms, I don’t get twitches or involuntarily movements from them or any of the other symptoms. Like hell I’d believe i had fibromyalgia cause least that’s more on the nose than Dystonia is.

I’ve decided not to take the suggested meds (just some dopemine stimulators or something called Stimol cause I don’t believe that’s an accurate diagnosis in the slightest...also not going back to this guy. I’ll go back to my GP and inform him of the visit and ‘verdict’ then my own thoughts and ask to try a different step in diagnosis method cause that was a serious fail...

Might sound harsh but I am unemployed so don’t have the money to just be tossing on waste of time appointments, plus I had such high hopes to finally be seeing a specialist for this muscle condition...thought maybe we’d talk then he’d do some tests, maybe trial my nerves and see if it’s a nerve issue causing the tightness...but nope...half hour of talk, prod and prognosis that sounds nothing like what I got.

Ugh idk, guess I’m just little irked over how it went and his...dismissive behaviour...like felt like he wanted to diagnose so could suggest a med that takes two months to trial so I’d get out and get lost already. Something I’m used to from old docs but kind of get more annoyed when it comes from a specialist... -sigh-

Back to the drawing board it would seem.... Sorry the mini rant and rave...

-Keira, out.

[cheshcat]

I had one neurologist be an utter fail. Was rude and dismissive. I still can get mad if I think about it too long, like who did he think he was? I now have a wonderful neurologist but I have to drive 2 hours to see her. I'm sorry you wasted your time and money. I hope you are able to find a specialist to help and properly diagnose.

[Hidden in reply to cheshcat]

It’s just irritating to no end when they do that and more annoying when feels like they’re diagnosing just to be rid of you 😒 But guess won’t know if good or bad til trying them out. Such is the joys of medical chaos! Fingers crossed things go better with the next one I see~

[LosingHope805]

Positive vibes . Feels for you.

[deejames]

If you already have got and have paid for the medication it might be an idea to give it a try. Perhaps he is right about your pain but if you don't try what is suggested then you will never know one way or another.

It is frustrating when you don't feel you have been properly listened to or diagnosed. Speaking to your own doctor might make things clearer.

Best of luck

Dee

[Hidden in reply to deejames]

I haven’t bought the medication yet. The neurologist has suggested Stimol tablets, 250mg. Half a tab a day for two weeks then one tab a day for another two to four weeks was the prescription. I think it’s a dopemine promoter or something that he said it might help release the muscles in my neck (though my pain is shoulders down to hips). The thing stopping me trying it now is that he said it could cause compulsive spasms and actions. I’m going to talk to my GP about the matter, if he suggests the med could potentially help I’ll try it but idk..... when I’m giving a med to help a condition I’m 90% sure isn’t what I got, I’m more reluctant to take it. 😅

Thanks Dee~

[cyberbarn]

I agree with Dee. If you don't try the medication then you can't prove to them that they have the wrong diagnoses. Humour them. If it doesn't work then you can go back and demand they look again.

[Hidden in reply to cyberbarn]

I’ll see what my Gp says before purchasing and trialling the med, he knows my condition and will tell me straight if he agrees or doesn’t (I just gotta wait for my next allowance paycheck to come before going cause that visit caused a blow to the account heh) ...I’m just reluctant to take a med that’s been prescribed for a condition I don’t have. And don’t think taking a med that could cause who knows what kind of side effects just to prove the neurologist wrong. Besides if it doesn’t work the next step he said would actually be Botox injections! Which I’m soooooo not doing...even if I did have Dystonia 😅

[katieoxo60]

Hi Keira, so you should rant. Dystonia is a fairly rare nuerological disease that affects the messages from the brain to the muscles causing muscle spasm. A freind of mine had a myotonica dystonia, which has several other symptoms which they put down to mental illness until someone challenges the diagnosis. Dystonias are often genetically passed on and can cause premature death if severe. Muscle pains can be the result of many illnesses including liver failure, kidney disease, flu,arthritis, and thyroid imbalance just to name a few. Plus Fibromyalegia not sure of spelling. You could even have muscle fibrosis.There are some drugs which can help but do not cure Dystonias. This person is most likely duping you as I think you realise and should really be exposed but he will be covered by the saying "in my opinion" Sorry my reply is no help but I could not resist when I saw your post. People with Dystonia are often disabled in wheelchairs and lead quite stressful existances because people don't understand not least some of the medical proffession.

[Hidden in reply to katieoxo60]

Exactly. I don’t get muscle spasms except when I haven’t had a massage for a long while and I’m just that tight...mean fibromyalgia or even muscle fibrosis least sound way more plausible and I have many more symptoms that line with that than Dystonia. Mean it’s a rather serious diagnosis when he didn’t do any tests, just asked a couple questions and prodded me a little... maybe if he’d run more tests I may of believed it but I just don’t at this point let alone with only one half hour appointment...

Ugh the ‘in my opinion’ excuse. Well in my opinion he’s BSing me and that’s frustrating as anything. All I can do is least say I tried the neurologist and take it to my GP who knows my condition better and go from there. All fun and games trying to get diagnosed for something few take seriously or understand unless experienced it. Thanks for your input!

[katieoxo60 in reply to Hidden]

Did you have any luck with your Gp?, hope so Your very welcome to my input I know a lot about dystonia, we even got our local college to do a group and make people aware of what it was. Best wishes for a resolution to your dilemma.

[Hidden]

I wouldn't go on the meds till you've talked to another doctor. although Stimol might be the correct treatment for that disorder: "The diagnosis is achieved through functional testing of the Autonomic Nervous System"

[Hidden in reply to Hidden]

Precisely. And I trust my GP over this neurologist so once I go to see GP and if he says it might be worth trying then I will but til then, ain’t touching the stuff. Too many cons to outweigh the pros ^^;