I had an MVD on October 3rd with some slight complications, fluid in ear, an allergy to the soap they used in the ER etc, nothing major. Long story short, 5 weeks out I was feeling awesome, had little to no pain from TN, only an occasional feeling like I was punched in the face, usually at night. If it lasted longer than a half hour, motrin would get rid of it, otherwise it was no bother. I was feeling so good I planned on going back to work next week.
Here it is a week later and I have no feeling in my hands, and when I do it is pins and needles all day long and feels like someone is sticking knives in my funny bone. I am so sick of pain and so deflated that now I have a new pain and cant go back to work yet. I have been up all night for the past week and a half because the pain gets worse when I lay down and travels all the way up to my shoulder. One doctor thinks I have MS, another thinks its from my neck injury...I have no freaking idea.
Has anyone out there experienced any thing like this? I am at my wits end now...I thought I had my life back, but apparently that wasnt in the cards. I want to get back to work, I am bored out of my skull, and sick of only seeing doctors. I want to just sit down and sob my eyes out , but I am so stunned by this new development I cant even do that.
That's really tough for me to read that about you.I know you are a really brave soldier. I have pins and needles in my hand because of Carpal Tunnel Syndrome. I have had two ops. One failed after 5 years and another just flat failed. But most people do gain massive relief from the op so I hope it may be that. I also hope you are tensing up from the pain and the shoulder pain is referred. But obviously I am not qualified to tell. Wendy, you know what regard I hold you in, I truly hope you can get past all this, soon.
((( Wendy ))),
I’m so sorry, wish I knew…I too experience pins and needles, no feeling at times in my left hand. I don’t know why, haven’t brought it up to anyone as my main focus has been my TN pain and my vertigo this past year.
I’m so sorry you’re experiencing pain. I hope you get relief and answers soon, sending positive vibes… Mimi
Thanks Mimi I really appreciate the note and vertual hugs!!
Here's the weird thing, during the day my left arm is numb and painful, at night it switches to my right arm. The pain is horrible. I keep thinking its not MS because laying down wouldnt cause ms to move around.
I have rr ms and your symptoms are a lot like mine I also have sjogren syndrome which has stopped me producing tears and saliva for sometime now and then low and behold I’m one of the 4% of ms suffers to get TN But it does get better once your meds are sorted have they offered you MRI scan and /or lumbar puncture once dx is confirmed thing move on fairly quickly but it can be a long road on the positive side this pain in arse Tn is the worst relapse I’ve had and it will get better until then stay strong and I find people are great on here and really understand when you need to let off steam I also found can’t have a good shout or scream any more as it sets off my TN lol
they are trying to get the MRI approved through my insurance, one for the brain and one for my neck. Insurance doesnt like to pay for more than one a year, and I just had the Fiesta MRI in June. THey also said they would do a spinal tap, which I refused. THere is nothing on earth that scares me more than having a needle in my spine....I will only do that as a last resort and if they will knock me out that I am not awake. Hopefully I will get the mri done next week,
Biofuels said:
I have rr ms and your symptoms are a lot like mine I also have sjogren syndrome which has stopped me producing tears and saliva for sometime now and then low and behold I'm one of the 4% of ms suffers to get TN But it does get better once your meds are sorted have they offered you MRI scan and /or lumbar puncture once dx is confirmed thing move on fairly quickly but it can be a long road on the positive side this pain in arse Tn is the worst relapse I've had and it will get better until then stay strong and I find people are great on here and really understand when you need to let off steam I also found can't have a good shout or scream any more as it sets off my TN lol
My uneducated guess would be something is pressing on a nerve in your neck area??? Because it's all upper body and I don't think MS comes on all of a sudden. I'm sure that was ruled out in some MRI?
thanks Kc!!! I appreciate it, I think its neck too...my neck no longer curves and is litterally board straight up and down, I have had some doctors tell me I should have been paralyzed from the accident. It was side to side whiplash, and there is nothing surgical to fix it, I am actually 1/4-/1/2 inch taller than I was. I am betting that because I was in the halo for surgery , then laid up for a few weeks with complications, that all this is related to me finally moving around and something got pinched.
Thanks so much for the support KC, you have always been a great help to me as are the others too
wendy
Kc Dancer Kc said:
My uneducated guess would be something is pressing on a nerve in your neck area??? Because it's all upper body and I don't think MS comes on all of a sudden. I'm sure that was ruled out in some MRI?
I thought I replied to this before, but I guess not! Sorry to hear you are suffering so! I have had very similar symptoms , so I can truly sympathize . I experienced the pins and needles that you describe a few years ago. It was the worst when I woke up in the morning,so I guess lying down was a trigger. I also could not turn my head to the left at all.My issues were related muscles and nerves in my neck. The muscles in my neck had been weakened in an earlier surgery, and I supposed they were pressing on a nerve. It made sense, as I had had a pinched nerve in my neck about 20 years ago, and the pins and needles were present then. I was also in TERRIBLE pain, much like you. I did physical therapy for a few months , on both occasions, and it really helped. I hope this is the answer for you. The suspected MS is scary, but I would imagine your neurosurgeon would have seen that on a previous MRI. I was tested for MS years ago, and I would not have the spinal tap unless absolutely necessary. It sucked, and I had a splitting headache for days.
I hope you feel better. I wish there was something I could do !
Christine
