Any ideas?
 

Hi, can anyone give me any ideas on whats wrong here...
3 1/2 months ago I woke with a really sore neck and pins and needles in my shoulder and right arm and weirdly, my toungue. After a few treatments from the chiropractor nothing was improving, infact the pins and needles had spread into my left arm and right leg. I had an MRI of my cervical spine which showed multi level degenerative disc issues and a small spinal cord compression. I saw an Orthapedic consultant who said the results were not enough to account for my symptoms which have progressed to literally every part of my body now.
I have permenent tingling that varies from really sharp stabbing pains to mild crawling type sensations over my whole body and toungue and roof of my mouth, my throat feels weird too. I have occasional headaches, weakness in my limbs, clumsiness and at times very severe back pain. I also have strange feelings in my eyes, kinda like pressure.
I have days when I am TOTALLY exhausted and days when im not too bad although I dont have the ability to do in a day what I did 3 months ago.
My GP has run some bloods and referred me to a Neurologist but he says 2 months roughly before I will get an appointment. I am really worried - the incidious nature of this concearns me.:( I feel the symptoms are gradually worsening every day and I get the impression my doctor is sick of the sight of me!
Any ideas?:(

Hi Igr6616, sorry I can't give you any info on your symptoms but I'm sure someone will be along soon who can, you've certainly found the right place. Only advice I can give you is to start a diary of your symptoms to take with you for your neurology appointment as they really ask a load of questions and appreciate if you can give a full history.
Take care Linda

Hello lgr
 

Welcome to Neuro Talk. I am sorry to hear of all the symptoms you are having. I wish your appointment was sooner than 2 months. I also hope that you can find a physician, that will listen to all that is going on. If you think your doctor is being stand off ish.....it may be time to find another. You need to have someone in your corner, now, not just two months from now.
I have PN. I can relate to some of what you are experiencing. However since you think this is spreading, finding a Neurologist that knows about PN and CPRS, RSD, would be advisable. Your PCP will know if the Neurologist you are going to see, has experience with these conditions.
Keep a journal of all your symptoms, On a calender is just fine. That way all that is happening you won't forget when you see the doctor. It is also a good idea to bring a friend. Sometimes with a person with you, the doctor tends to pay attention more to you. Also if he says something you miss, your friend will be a back up.
If some places are more painful than others, perhaps your PCP would prescribe lidocane patches or a compound to take the edge off. You may need a pain specialist as well. Research all you can. I see a physiatrist, who happens to specialize in pain. She treats the "whole" person. Avoid all chiropractic as you don't want to make any of it worse. A neurologist should clear you, before you do that OK? Have your B12 Checked. Many people who have PN experience low B12. I take that and a number of other suppliments, and have improved over the last year. None of us are doctors here, but there is good support here, and good ideas to help. You want the A Doctor, not the D student for dealing with these kinds of issues. Research the physician. Get a second opinion too, no matter what the outcome is. It is really important to have a good support team, both at home and with your chosen physicians. I have three involved in my care, monthly. I don't know what you have, but you present with some neurological pain. I know how bad it hurts too. Please let me know how you do. Others will be along to add their ideas. I will keep you in my thoughts and prayers. I also hope a solution can be found to ease the pain. ginnie:hug::grouphug:

Hi, thanks for your response. I will keep a diary ... things change day to day hour to hour sometimes so it it would be really valuable. Good idea!
My doctor has me on a low dose Gabapentin at the moment - its not doing much so far but I have been building up the dose for a week so fingers crossed it will start working soon. I was on a high dose anti inflamatory and Omeprazole for a couple of months but have stopped taking that now, they also prescribed Diazepam and Pethadine at times when I have been really struggling.
Pain is a real issue for me, I am allergic to a huge list of pain medications so have to take any new medication really slow to start with just in case. I have a pain meditation app on my phone which helps me get to sleep!
I had a new symptoms last night ... the bottom of my right leg and foot felt FREEZING COLD painfully so, still the same this morning.
The Neurologist I will eventually see is a specialist in periferal nerve issues so hopefully will be aware of the conditions you mentioned. Our NHS allows us some choice in who we see - I will do some research to make sure he is the best person for the job!
Will make sure I get my B12 checked - I hadn't heard of that before and pretty sure they didnt test that in my bloods last week.

Thank you!

First off, a lot, if not most of us here understand these sensations and pain. It can be devastating and all consuming.
Its important not to panic. I too, have it widespread and doctors are sick of seeing me. Its been 3 years, and I'm still alive. Sometimes the sensations make us feel like were more sick than we are. Keep the term nerve conduction study in mind. Its what got me my diagnosis.
Try to keep yourself occupied and take good care of your mind and body . That app sounds great! There are a number of meds to try, from anti depressants like Cymbalta and Amytiptaline, to narcotics if required. Cold compresses help me when all else fails. Just don't overdo it. Heat tends to make the nerves more active, so its not really advised.
If its any comfort, here in Ottawa Canada, our wait time to see any neurologist is at minimum 9 months. Start with research, and keep that journal , as the wonderful Ginnie mentioned.
It probably wouldn't hurt to start on some methylcobalabin (B12), as you can't really take too much of it.
It can be discouraging as all hell, but fight for good care. Neuropathy is very common-especially in diabetics and alcoholics.
Keep us posted.:hug:

Finally I have some answers! I have splashed the cash and paid to see a private Neuro. Turns out the consultant I have been seeing has mis-diagnosed me completely!!! ( I am furious) I have a nasty spinal cord compression in the top of my neck - hence the nerve symptoms all over. I need surgery to remove a prolapsed disc and bone spur that are pinching my cord opposite each other. Phew ... great to have answers.:) Fingers crossed I get a date soon before any more damage occurs. Thanks for your help and advice :grouphug:

... and I have made a complaint against the doc - he needs to know he made a mistake and not make the same one with anyone else!

Hi Igr
 

You are going to be just fine. Get the surgery. If your nerve is being squished, you will notice no pain that way right out of surgery. let us know when the date is. All of us will keep in touch with you. My own surgery turned out good, so know that you can be a lot better. ginnie:hug: