Hi I have posted lots of threads etc, not been dx and I have had loads of tests regarding all my symptoms.I know others conditions can mimic MS, however it makes living with these symptoms dreadful. I am passed myself as to what the hell is going on…Feel like I am going MAD!!!
Had symptoms now for over 11mths, had MRI, that was non specific so I have been told to wait, the pain in my arms, wrists, fingers and legs are constantly there. Headaches, dizzyness and vision probs…Not worked for 11mths,I dont go out on my own., feel my kids have not got a Mum any more, because I dont do anything with them. They are 16 & 14.
Miss my life I use to have, I just dont really know how to deal with this any more.
It is tough being in Limbo. I was where you are for 6 years so 11 months is not long
All I can suggest is you try not to dwell on it and get on with your life as much as you can. There are a lot of medications that can help relieve your symptoms even if you don’t have a diagnosis. You DO have symptoms that are causing you distress and you don’t have to suffer.
11 months is a long time to be off work and I am sure with the correct support you will be able to get back to work and get to your life back on track. I know you have mentioned not liking your job at the Nursery and we have talked about anxiety, migraine, stress etc a few times now. Have you asked your GP about some counselling yet to help you thorough this difficult time?
If it is MS it will show itself clinically in time. In the mean time, given it is not showing itself be grateful that you are not so severely affected by it that it is screamingly obvious. Do seek help for the ? migraine diagnosis because there are some fantastically effective treatments for that and do follow up the counselling.
I know, it is doubly hard when we dont know what we`re dealing with.
All my tests come back normal. Chuff knows when I`ll get the results of my last LP.
The various conditions I wonder about are;
PPMS
Lyme`s Desease
HSP
I may never get a diagnosis. However I know whatever it is, will stay with me for life. I just pray I havent passed it down to my daughters or their children.
we continue to live and cope…some days are better than others.
You don’t need a diagnosis to get meds for symptoms. If your GP won’t give you anything, phone your neuro’s secretary and ask for a recommendation for your GP. Then NAG until you get it!
Some neuropathic painkillers are multi-functional: treating pain, spasms and sensory issues as well as acting as a migraine preventative. Something like that might transform your life!
One of the neuropathic pain killers Karen is mentioning that is particularly good for migraine prevention is Sodium Valproate. Definitely worth asking about.
Hi Jan, I’ve been off work in limbo around the same time as you, and funnily enough I think I also reached a low at the weekend. I thought many of the things like having my life back that you mentioned.
My daughter is a few years older than yours but I miss doing things with her like I used to, however I do think yours are old enough to understand if you are fatigued…I am continually grateful of my daughters age when I read posts about coping with these symptoms with a couple of kids under 5 yrs…(((((OMG!))))))
I take oral lyophilisate wafers for migraine and they are excellent at stopping most dead in their tracks…and I take amitrypyline and gabapentin to deal with the neuropathic pain. I also believe Karen’s advice about the GP prescribing stuff to help deal with the symptoms…I have Docs in the family tho sadly not in this field and they all scream “DO NOT suffer pain in this day and age there is a med for you, just be patient and persistent!”
Karen has talked before about sometimes having to give a drug a chance to work/settle and sometimes you need to tinker with the timings/dosage etc.
I got a lovely couple of messages from Poll and I am back in the happy to be alive gang today…so I do sympathise jan but just try to follow all the great advice off the “oldies/experts” who have a sad amount of limbo years between them…20years just between Belinda and Poll…!!!
PM me if you get low… I find that helps me pick myslef up
I know Poll and Belinda are fab even tho non of us have met!!! I will get there it will just take time and like I posted earlier will ask for some meds.
So glad we have this forum, would be totally lost without.
Hi Sonia, Finally got some anwers today…Symptoms are due to Vestibular Mirgraine!!! Been given betablockers and will see me in 4months. I asked about my stiffness in my arms, hands and legs, at first he said he could not say. Then he told me about the different areas of the brain which work ours bodies and he said that can be why I have this pain!!
Feel good I have got some answers, been a nightmare yr, how do you feel Sonia,? Do you suffer from headaches?
YAY to finally having some answers, Jan. Let’s hope you feel like a new woman in no time with the betablockers and you can start to get things back on track.
