Neurology referral

[dwsurquhart]

Finally, after having very weird symptoms for over 3 years, seeing hematology, rheumatology, immunology, infectious disease, oncology, radiology, nuclear medicine, sports medicine, joint replacement departments, dermatology and surgery. A pain doctor I saw last week asked if I had ever seen a neurologist. I responded with a NO but have been asking for some time. I now have a referral to a neurologist as this doctor feels I have very late onset Lyme disease. Now I have to wait for probably 6 months to a year to see neurologist. I have been told by the pain specialist that the amount of osteo I have in my knees does not correlate with the inflammation I had for the last 2.5 years. Cartilage in the knees is around 3/8" or 10mm behind the patella, mine is around as thick as a piece of paper. Now it seems that some of my doctors are taking this seriously and want to find out what caused my insane immune response a 3 years ago.

To all of you trying to figure out what is going on with yourselves and diseases, Just keep plugging along and bugging your doctors to figure you out.

Cheers and thanks for letting me rant a little.

Scott

[Hidden]

Hello well you’d think they would get you into a neurologist as quickly as possible after everything you have been through. Hope it doesn’t take too long and that they finally have answers for you. Good luck and chin up 😄

[Matilda7]

I’ve just, for the first time in my life, been to see a consultant privately as the NHS referral isn’t till November, which was 3 months away at the time. I paid £150, and next time will see her on the NHS. Couldn’t bear to wait so long.

I have a cousin with Lyme’s. Were you bitten by a tick?

[Gnarli]

Hi Scott. Well, you certainly got yourself a whole bunch of ologies looking into your problems. Apart from Neurology you can't have been missed by many. Only joking but it goes to show that you have to work hard at being your own advocate to get the answers and treatment you need. I hope you get both answers and treatment pdq. Hugs

Jan

[dwsurquhart]

Thank you for the replies Sylvia, Matilda and Jan.

I am not sure if I have been bitten by a tick. It is surely possible as most of my career as a heavy duty mechanic and most of my hobbies are out in the bush. I have worked from southern Alberta to North West Territory, to Haida Gwaii to Vancouver.

I would love to see a Neurologist here and pay for it, except it is a lot of money and I am running out as Disability insurance is just enough to cover my mortgage and some bills. Good thing my spouse is employed to cover everything else.

Whether it is lyme or not, the pain doctor wants me tested for neuromuscular disorders. This is because I had lost 52# of muscle mass in 7 weeks in 2015. I have been working out at the gym for a year now and cannot get the mass to come back. So something is causing the muscles from forming.

My father had asked if I had been tested for Parkinsons disease. I do not think so, but I do believe it is neuromuscular. A few years ago, i had what the doctors think was Shingles and then developed a twitch in the right side of my neck. When I am stressed it twitches all the time and when I am relaxed it twitches randomly. This seems to be when everything started. Hopefully they can figure me out and get the right course of action.

Currently on 400 mg IV Tocilizumab, furosimide 10mg daily as needed, tylenol #3 for pain, tizanadine to help me fall asleep.

I never had to have any medication before all this started.

Scott