Hi all! Just having a whinge!!!
This is my 7th night up with the mother of all Hugs! I’m sick of the pain now!
No coincidence that it’s come at the same time as all the stress from my compulsory redundancy eh!!
xxjenxx
Hi Jen.
Could your GP not take pity on you and prescribe a muscle relaxant?
Not that I’m recommending this long term, but alcohol is a muscle relaxant…
I hope it eases up soon.
Karen x
Hi Karen xxx
I saw the neurospinal surgeon 3 weeks ago and he was mortified at what’s been happening to me (or rather not happenning!) since i saw him last November.
He was really concerned about the numbness and that I can’t feel my bladder and was surprised that my GP did’nt have me admitted to hospital when I started to lose bladder control n Feb and at the same time had the hypereflexia with sustained clonus etc etc
He and 2 other doctors examined me and they said I now have the Babinski response and considerable muscle wastage in my left leg & weakness in my right leg (no relfex at all in my left). The hypereflexia is pretty bad on my knees and ankles
He said he would speak to the neurologist that afternoon to voice his concerns & lo & behold I’m seeing the nerologist next week with further MRI’s & nerve conduction tests!
He was also concerned that I have not been given any meds and said he would write to my GP approving Baclofen, Gabapentin or pregabalin if I need it. I’m waiting for my GP to get back to me this afternoon to find out if he has done this & whether I can now get some help with these spasms & stiffness. I can’t take much more to be honest!! xxxxx jen xxxxx
Time for a new GP???
I’d be tempted to take up residence in the waiting room until I got a prescription if I were you!
It’s not normally a great idea to be starting more than one med at a time, more’s the pity!, so maybe try the one that’s best for the worst symptom first? Baclofen is the muscle relaxant, but if you’re losing muscle it might make you weak(er) so please be extra careful when you’re moving about if you go for that first. (The main reason for not starting more than one med at a time is so you know what’s working and what isn’t, but it’s also because of side effects: one new med can be difficult, more than that might be plain miserable! You might be lucky though. I hope so!)
Kx
Cheers Karen! i think he was going to let them know these are all ok to prescribe me (and some others I can’t remember!) and then the choice would be between me & my GP which one I suppose.
I’m just about to google them properly but the baclofen sounds like what I need at the mo!!! xxjenxxx
Waaaa haa haa! Just looked up the side effects of baclofen & they are practically all the bloomin symptoms I’m having!
burning, numbness, or tingling; chest pain; confusion; decreased urination or inability to urinate; eye or vision problems (eg, double vision, lazy eye); fainting; fast, slow, or irregular heartbeat; fever or chills; hallucinations; loss of muscle tone; mental or mood problems (eg, agitation, anxiety, depression); new or worsening muscle stiffness or spasms; pain; one-sided weakness; seizures; severe or persistent dizziness or headache; shortness of breath; slow or shallow breathing; speech problems (eg, slurred speech); swelling of the hands, ankles, or feet; tremor; unusual tiredness or weakness.
GP just rung and she is starting me on a very low dose Baclofen - he also prescribed something for the fatigue but I have to see how I go on the baclofen first xxxjenxxxx
If we worried about the side effects lists, we would never take anything! (You should see the pregabalin list!!! :-0)
If you build the dose slowly, most side effects wear off after a week or two. Anything worrying and speak to your GP / NHS Direct.
I noticed a difference pretty quickly when I started on baclofen. I hope you do too 
Kx
Blimey, I’ve never had ANY of those side-effects of Baclofen, and I take quite a lot! I don’t know what source you’re using for the side-effects - whether it’s the patient information leaflet, or something else, but don’t forget they often list everything that anyone taking it has ever had - even if it’s not proven to be connected.
For me, Baclofen has been literally life-changing. When I was first prescribed it (after a bit of a battle, just like you’re having), I realised I should have been on it months earlier. I’d been living with the cramp and spasticity for so long that I didn’t appreciate just how bad it was getting, until I took something that eased it. Like not noticing a noise until it stops!
So for me, it’s been excellent. My neuro wants me to cut down, which I’m very reluctant to do, when I’ve been so happy with it. Feels like going backwards, to try to cut down something that’s been so helpful.
But anyway, that’s another story. Hope you get on as well with it as I did!
Tina
Gosh you’re in the wars Jen. As Tina said a lot of the drugs list everything - not everyone experiences every symptom and a lot of them go away. It shouldn’t deter you from giving baclofen a try.
My spasiticity has been the biggest issue over the course of neuro problems - going through a good phase at the mo touch wood but the last episode I had whooping cough and a terrible abdominal hug. I was in agony and couldn’t turn and even if my partner just touched the area I screamed.
So I really understand how horrible it can feel. I really hope the baclofen works for you. I’ve had diazepam once or twice which made a huge difference but obviously not something ideal for longterm problems so baclofen is certianly on my list of things to ask for if the spasticity rears its ugly head again and becomes a more permanent issue.
Good luck Jen in getting answers and feeling better soon.
Reemz
X
Pretty good excuse for long term though
Bless you. Hug is horrid. I use diazepam when I get it xxx