I just want to know from people who unfortunatelyhave had CFS/ME for a number of years. Have you had any MS like symptoms during this time, like minor umbness of hands and feet ? Have you been tested for MS and what happened ? There appears to be similarites but they are distinctly different ? I'm 6 months into my PVF now CFS, just feel zombified on a daily basis, some days worse than others. Like i'm 34 and it feels as if my heart is barely beating. Thought i felt my right foot feel numb this morning. I am awaiting to see a neurologist, upto12 weeks. The NHS is great.
yep im 17 months in and was checked for MS as had numbness, tingling, twitching , jerking you name it! Had a full Neuro check and MRI, neuro said i didnt have MS as balance was fine and no lesions, but they did find a cyst on my pineal gland...i am not sure if its my cyst causing these or my CFS!!
You will get there and try not to worry as anxiety makes it all so much worse - trust me i have been there
Hey Jacquie, thanks. Had a shocking day yesterday, feeling signficantly better today. Acupuncture made me feel better but i am a million miles away from where i was. i'm not even bothered about getting back to that level fo health and fitness, if i could have a job/normal life i'll take it, right now that would be impossible. i'm only 2 weeks into acupuncture and herbs, i plan on doing one month with 2 session/week plus herbal remedy, then evaluate.
Jacquie, do you also have that feeling that your heart is barely beating or are you ok in that department ? I mean i sit here and type, don't feel too bad, when i get up to move about, Lord save me ! lol I might summon the energy for a sauna today. And seems as i cancelled my membership it costs me 6 quid/session. You know life is expensive when your healthy, when you are ill and want to get well it's even more difficult. Well that's me proper 6 months into this nightmare ! GP said to change diagnosis to CFS. Gee, thanks.
i think every time we have a shocking bad day, it makes us think we are not getting anywhere...i have just started CBT and trying to turn these bad days into positive days...you will get to that job / normal life, it will just take time and patience...enjoy the break, strive to do 1 thing a day that is an achievement even if its just a walk somewhere or making your favourite smoothie...ive had lots of bad days recently and i know this illness by now that i am due some more good ones soon
David - im the opposite...my heart races...it really scares me...i have llow blood pressure but fast heart...i bought myself one f those watch monitors that can keep constant check on it...your heart is probably slow because you were so fit before?
Oh wow. I do get ectopic beats but have always had those. I keep getting test after test ran and i am ok. LOL. Yeah my resting rate in peak training was 37BPM now i notice because of lack of training it is 46BPM in the morning. The hospital said my heart was slow, i said no this is fast for me. I had to tell them i had been an endurance athlete for many years and they were like ah, ok. Have you tried TCM ?
Lyme...WELL... my local GP's i have to say have been OUTSTANDING on this. They know i am very unwel because i have'nt been to the GP in years and it's bugging them as much as me as to the cause. I am awaiting auto immuniology results from haemotology but other bloods were nornal.
So lyme,i have had the ELISA test ran and was negative but in contact with the Lym Disease Association who are overseen by the Department of Health so they have to present accurate info to the public, LDA tell me and show me documents to show the GP, pubmed studies clearly showing ELISA tests very unrelaible, ie-people like me testing negative on all eight ELISA's then doing the Western Blot, they are positive for lyme. SO my GP telephoned around yesterday, but the lab is saying because i tested negative on the ELISA i probably will not get Western Blot on the NHS. The GP has said to leave it with her for now. Appointment Friday.I told her i already have a private test kit i was sent at home, she says if she cannot get the test for me she will be more than happy to help me do this, but had the OUCH moment on her face when i told her £150 for it, which i don't think is too bad.
My reality is often people say 'oh you were studying naturopathy, you should be well by now' which yes you would think, BUT, what i am finding out is when genuinley seriosuyl unwell the mind is a BIG problem. I've found my health improves when each disease is categorically ruled out, this brings me progress and closer to healing. So ALOT of nutrional stuff i can do is on hold, i know from the moment i start it will alsolikely take at least 3 months to work. But i need to rule out lyme, then after than MS, then after that there is nothing else and i can make peace with the diagnosis and deal with it with everything i have, my focus will not be distracted by other ? you know ?
I get what is called sock sensation - feels like I have a sock on my feet up my legs - turns out I have peripheral neuropathy (had to get to see a neurologist privately via Benenden as the wait was astronomical on the NHS). I also get severe shooting pain like being stuck with needles and apparently this is also due to the PN.
Thanks. Definetely feel i have some neurological stuff going on. Waiting 12 weeks for a neurologist on the NHS, not good. How much did you pay to see someone private ?
Hey Jacquie, thanks, the waiting is almost as bad as the illness right ?looking into private MRI, already made 2 enquiries.
DEFINETELY the way to go and for about £250 well worth it, as SA34 said. Apparently lyme is under diagnosed and on the increase, many people suffer for years without knowing, many with conditions such as what we have CFS/ME. I'm just watching the circulation go all wonky in my hands. But for some reason at the same time i am starting to feel really alert. You know later stage lyme after 6 months becomes quite neuro, hence they call it neuro borreolosis. Anyway hope that helped. I've actually been on doxicycline for the past 2 weeks as a possible lyme treatment. As i said my GP's have been so great !
David - i will look into that Lyme test - is it much better then to just bi pass the ELISA and do western blot? ii need it to just be gone from my brain as a possibility more than anything
Hi David,I too have CFS and weakly positive test for myasthenia gravis,I've had this for 7/8 years now.About 2 years ago I was getting numbness in my back between my shoulder blades,spoke to gp she said she wasn't sure,last summer my face went numb and over the last few months I've been numb in my head,face,feet,toes,legs and arms ,mostly the right side and tingling burning and the most annoying feeling like somebody is sticking Pins in me.seen my neurologist and waiting for results of MRI,I only waited 4 weeks to see neurologist and then 2 weeks later had MRI,so that sounds like a long time for you to wait.