Right well yesterday I ended up at the out of hours GP because after waking up at 8am my right arm would just not stop jerking and twitching, and if nothing else, it was actually really hurting my shoulder and neck and I kept thinking I cannot go until Monday to see my own GP.
Well, I saw a lovely doctor who took time with me to ask about whats been going on with me, listened to me (which is obviously so important to all us in Limboland) and then suggested that I immediately start on a beta blocker called propanolol (? anyone else on this?) and phone the neuro I am due to see on 3rd July to see if there are any cancellations before then. He also said that all my symptoms correspond with progressive MS and maybe even with Parkinsons. So off I toddle (having cried in front of my 17yr daughter which is something I would never do) and go to the local pharmacy to get this new prescription. The pharmacist was great as there was me jerking all over the place, feeling stupid and feeling like I could burst into tears at any point. So I got taken into a consulting room to sit down (calm down) and the pharmacist came in and was just so amazingly lovely and explained all about the beta blockers etc, and also asked about my symptoms. She even suggested that I get straight onto DLA to get that paid as there is no way I should be driving (terrible eyesight - Optic Neuritis in both eyes back with a vengeance) and there is no way I should be working (I did explain that I havent worked now for over 12 weeks and was on Emp Support Allowance).
Now, whilst I am forever grateful for the wonderful doctors I have seen so far, and for this pharmacist too, I am just so scared now. I cannot for one minute imagine having a disability as I am 48 and have always been relatively healthy. And I cannot imagine also having to get support on a daily basis, as I am so independent. My wonderful fiance is great, but we dont live together, we are just together every weekend. So I am now very scared. I fear for my future and I fear for my independence too. Can someone please give me some words of encouragement as at the moment my future is looking a little bleak. As I said, yesterday was definitely not the best day I have ever had.
Can I also say thank you for the amazing support you all give. I, for one, appreciate this so much and have found this site an absolute Godsend for me. x
I also suffered with the most awful jerking, saw my neuro and she put me onto Clonazepam which calmed the jerking down. I started on a low dose and worked my way up to 3mg per night. I found I couldn’t sleep for jerking and during the day it was just as bad. Please don’t feel bad about crying in front of your daughter, after all it is frighening when you don’t know what is happening to you. I have got SPMS. Not for one moment I am saying you hgave got it, but when you see your neuro she will give you lots of tests, MRI, EEG, VEP, they sound worse than what they are, In the mean time rest as much as you can and try not to worry as your neuro will sort you out. Have you got a ms nurse? You could try ringing the ms helpline they are very good, kind and helpful. Try not to worry about the future, I know easier said than done, but wait until you know what is actually causing your problems and go from there. Once you are on a drug things should calm down for you and will be able to find your feet and get on with life again.
Please let us know how you get on, in the mean time, rest and take care of yourself.
Hello PM64, what a time you are having! I am on propranalol, and find its been very helpfull in calming lots of stuff down. It starts working and you will feel the benefits almost immediately, but I did find it took me a while for my body to adjust and settle down into it. I’ve been on it about 3 months and am fine with it now.
I too was tols it was likely I had ppms, but I think it was a bit premature, as st that point I hadn’t even had a MRI, so try not to worry too much. If you can move your appointment forward, then do so, as it will save you extra days/weeks of worry, but try not to let anxiety and stress add to your troubles too xxxx
so sorry to hear you are having a difficult time to say the least…it’s good the dr has out you on something to help and the pharmacist was so very helpful…if you can get neuro appt sooner then I would try…think they need to see what’s going on…and act on this…re tests…I know itsq not great but they are necessary to help I a dx. you may have to make some adjustments in the meantime…like you I am very independent but there are times when you have to give yourself a break and get some help even if it’s just in the short term and then see how you go…there may be lots of help avail re an OT too to asssit you in being independent at home…and am sure your partner will be there for you no I matter what…we are all here too to help and support you so please lean on us too…x
Thank you all for your support. You really are a great bunch on here xx
Im going to phone the neuro secretary tomo morn and make an app with my own GP too. I have already had an MRI and that was fine but my GP said it only ruled out a brain tumour, and the doc yesterday said not to read anything into a clear MRI as my symptoms are without a doubt neurological.
I think it is all just so scary at the moment, my eyesight is awful and I feel rubbish most of the time. Not working means I am bored and yet have no energy to do anything. Its a far cry from the usual me when I am able to take on the world. I feel really insecure about the future and thats scary too.
I am sure when I get some answers I will deal with it no matter what, but this Limboland is a horrible place to be for now.
Thank you people for your kindness, support and encouragement xx
pm64, so sorry you are having a dreadful time, I hope the medication is kicking in. like you I am independent but working on asking for help from everyone in my life. I keep telling myself that when it’s there turn I will be there for them in return. I’m in limbo land and it truely is a horrible place I swing from am I imagine this, shall I go back to work or yesterday I declared to everyone I was thinking of buying a bike as can’t drive…there was hysterical laughter for a good ten minutes. take care thinking of you xxxxx
Hi cocochanel. The thought of me on a bike (and anyone who feels like this really) made me giggle. So thanks for that! My balance and eyesight is shot to pieces at the moment so not sure thats a good idea! lol at the thought tho!
Ive been off work for 13 weeks now and cant see me going back any time soon as I feel so poorly. I am the person that always offers to help others so asking for help is difficult for me. Its tough to be honest with people and say how poorly I really feel too. Limboland is awful but I really hope to get some answers soon. The new beta blockers seem to be working well as the constant jerking has stopped and Im only getting twitchy jerks in my right arm now. So thats good. But I have never in my life taken so many tablets each day. Makes me wonder if the side effects from the tablets are hindering me too.
Thank you cocochanel. Its good to laugh at ourselves I think (otherwise I would be crying an awful lot!). I have a couple of friends who are really supportive, and my family are great too so I do know how lucky I am. xx
The Neuro put me on Propananol, told me it was for my migraine. I had a numb arm and bad heads approx 17 years ago and beta blockers fixed it. But now arm has been dead for 6 mths. Been on Propananol 1 x 3 times a day for 2 weeks and just increased to 2 x 3 times. No energy before I stated taking them and Gp said I would have even less on beta blockers. Headaches still the same, but numbness a bit less and must admit leg jerking less esp at night. Waiting for an MRI to look for MS. Neuro said headache not a sign of MS, but looks like lots of people are suffering.
pm64 glad to hear a little cheer in your message, you will get through limbo land as will I so hope to be at the end of this journey with you. take care xxx
I’m in same boat as you, undiagnosed, just turned 50, had symptoms on and off for 40 years but mostly on all the time these days. I’ve always been fiercely independent and busy, busy, busy and now suddenly I’m off work for 3 months, eyesight problems, bowel problems etc and bored out of my brain. I have to go back to work next month for financial reasons but really should not be. So far I have hidden all this from my employers and colleagues but I know that this will all start to unravel now. I have no family and although I have friends they have all moved away so are not local to me any more. I was divorced 12 years ago so really am alone in limboland and it’s horrendous. I can totally sympathise with how you are feeling. I made it my New Year’s resolution this year to get a diagnosis (whatever it turns out to be) but think I will be disappointed. I believe I have relapsing PPMS. Just had a lumber MRI and am just awaiting results. If it’s clear Neuro has already told me that he will wash his hands of me.
You have your daughter and fiancee and they will be your lifeline in this journey. I hope things get better for you, sometimes knowing what you are dealing with is better than not knowing! Dianne x
Dianne - Thank you. I just want to know what is wrong with me, then I can and will deal with whatever it is. 40 years is such a long time to have symptoms and no dx so I really do feel for you. Financially I too am totally screwed, but I keep thinking that I will get through this no matter what. Good luck to you Dianne and please pm me at any time xx
which is something I would never do) and go to the local pharmacy to get this new prescription. The pharmacist was great as there was me jerking all over the place, feeling stupid and feeling like I could burst into tears at any point. So I got taken into a consulting room to sit down (calm down) and the pharmacist came in and was just so amazingly lovely and explained all about the beta blockers etc, and also asked about my symptoms. She even suggested that I get straight onto DLA to get that paid as there is no way I should be driving (terrible eyesight - Optic Neuritis in both eyes back with a vengeance) and there is no way I should be working (I did explain that I havent worked now for over 12 weeks and was on Emp Support Allowance).