STILL NO FURTHER FORWARD WITH APPOINTMENTS!!!!

[LoolooLacey2]

I have been waiting since last August to see a Neurologist, the Human Genetics folk and the Pain Clinic. Eventually I received a questionnaire from the Pain Service and now have an appointment end of March. I also received an appt for the Human Genetics Clinic on 6th Feb past, however when I attended I noticed that the Board at the Clinic said Neurology OP's! When I got taken 30 mins later than planned I find out that the Neurologist could not make it that day - to say I was furious is an understatement. No explanation was given. So after a 4 hour round trip on public transport I was no further forward. Also, because my medical notes were destroyed in 2010 because I had not attended hospital for a while, I had to get all my past medical history from my GP and pass it on to the Human Genetics people. They promised a re-appointment for Neuro, but so far nothing. I am going to chase them up tomorrow. I am really fed up of all this. I would like to get a diagnosis after all these years of suffering. All I want is some pain relief to and to be able to sleep for more than 2/3 hours at a time. I am so tempted to get some CBD Oil or Capsules and try them, seems they are very successful for chronic pain issues. I also wonder how many people on here with CMT or awaiting a diagnosis suffer from any of the following - Raynaud's Syndrome (cold hands & feet plus in my case my nose & my whole body when I get it bad), Sjogren's Syndrome (dry mouth and eyes), cramps in my thighs, calves, toes and tummy (diaphragm area), Tinnitus (which again could be related to nerve issues) and IBS (Irritible Bowel Syndrome) which comes and goes, can be bad for a few days then settles down. Also, I have been told I have a very fast gastro/colic reflext which means after I eat a meal my stomach empties pretty fast and this makes me have to go to the toilet quickly. It come son so fast I get no chance and sometimes have accidents. This could be related to the vagal nerve so once again a nerve connection. Recently, I have also had weird stabbing pains like mini electric shocks in my buttocks, my toes and my legs which make me jump, it is not agony it is just odd and it is like being nipped, this is a new symptom. If and when I finally get a Neuro appt, and apparently there is a lady Neurologist who is interested in CMT, I will let you all know. I am off to bed now and hope to get a few hours if possible. Have a good night all. Take care. X

[Hidden]

I understand… The struggle is real!

I hope you’re able to get some sleep too🌷

[Amanita]

Hi, LoolooLacey,

I'm sorry you are having such a rough time. CMT is quite bad enough without all the other things you are having to put up with. I go through periods of managing only 4-5 hours' sleep for some weeks on end (for no particular reason), which makes my brain feel quite slow and porridgy - but perhaps you have more than just one or two of your short sleeps in a night - I hope so.

A six month wait to see a neurologist is bad - it was only 3 - 4 months in 2011. But infinitely worse when he/she fails to appear and you have to start another wait. Have you tried saying you'd be willing to take someone else's cancelled appointment at short notice? Sometimes works. You could also try some chivvying, explaining you have already waited so long - and been let down.

I do hope you will manage to have a neuro- appointment before too long, and that whoever you see will listen, and be helpful.

I strongly advise you to make a list of the things you want to ask/ discuss. I always do this now, and print off two copies, giving one to the consultant. That way, you will not find you have forgotten something important , and the consultant will see that you have concerns, and want to make the best use of his/her time while you are there. It is also acceptable to have a family member/spouse/friend come in with you - but do introduce them.

[LoolooLacey2 in reply to Amanita]

Thank you so much for your reply, much appreciated. I have made a list to take with me, but because I was not told this was supposed to be a combined OP appointment I did not think to print it out. I have had my letters back from the Genetics Doc who has copied them to my notes so that is a start. I am going to chase things up this Monday coming - I will phone the Neuro Secretaries and explain what happened on 6th Feb. I will also say I would like to see the Consultant at the Clinic in my home Town, the one my son already attends, apparently she has an interest in CMT and other types of diseases. I will do what you say and make sure they know I am not happy at the long wait plus the fact I made a long journey to an appointment that was not fruitful and through no fault of my own. All I want is a proper diagnosis, but this seems to be too much to ask for and should not be. Will keep you posted on my progress and thanks for your support, it does help a lot. X

[spabbygirl]

That is really bad, to have a wasted trip on top of all the other problems we have to put up with, I think ringing the secretary is a good idea, explaining your wasted journey. I think this government is deliberately running down the NHS to make us all go private, they really want low taxes for wealthy people and the only way they can do that is by cutting public services. The only way for things to change is in the ballot box. I hope things get easier for you x

[Tewster]

I have cmt,and i do take cbd oil from sensimilla on Facebook,i take the 30ml but with great success, pain reduced by about70% and sleep is awsum,now trying their new one venom which is their strongest, try it you got nothing to lose,hope this helps

[LoolooLacey2 in reply to Tewster]

Thank you for some support on CBD, I am a little bit scared to try it. Is it ok to try it out whilst I am on Tramadol? Been on Tramadol for 16 years now, it just about gives me relief, but not as good as at the beginning.

[Tewster in reply to LoolooLacey2]

Yes certainly try it,its a natural product, it is awsum, lots of CBC out there is weak in strength so be careful, i get mine from sensimilla on Facebook, good price and good strength, so go for it and i hope you stop taking the tramadol

[LoolooLacey2 in reply to Tewster]

I have looked at Sensimilla and spoken with them so I am going to buy some to try out and also for my old doggie who has bad arthritis and the Vet says life long meds, so would rather help him with CBD oil. Hopefully, I get some relief with it and will keep you posted. Thanks for your support to. X

[Tewster in reply to LoolooLacey2]

I hope it makes life a lot better as it has for me,all the best to the both of you👍👍

[Amanita]

All the very best for Monday's phone calls - I do hope they will produce a helpful result.

[strawberryshortcake]

Yes I have reynaudes and arthritis as well as cmt. I get really bad electric shocks sometimes, especially in my hands, it goes up my thumb and sends my fingers numb. Get it in my legs as well. I’ve tried cbd oil and find it does help with the shocks and pain.

[LoolooLacey2 in reply to strawberryshortcake]

Just in the last 2 months I have started having these shocks as well, have had slight ones in the past, but these ones are more noticeable. Seems like being nipped by something, makes me jump a bit, which is a bit embarrassing when outside in public. These seem to come and go, I get ones that go from my wrists right up my arm and into my chest, they are definitely nerve pains. I think a trial of CBD oil might help me a lot.

[beachwine]

Looloo, where do you live? That's a long time to wait to see a doctor.

[LoolooLacey2 in reply to beachwine]

Hi, the reasons for the wait are that my initial diagnosis was and still is an inborn error of muscle metabolism. However, since I retired as a Medical Secretary in 2006 I have had no Consultant to deal with this issue. By shear chance another lady noticed my story on a website and contacted me as her daughter has the same diagnosis and from there I found a new Consultant who deals with Adult Inborn Errors of Metabolism. When I finally saw her last June & August 2018 she wanted me to be referred to the Neurology Dept due my odd symptoms that point to CMT (some kind of neuropathy - I am not diabetic so it is not that kind). But as is usual with the chain of command in the NHS a letter to my GP was not typed until November 2018 (from Aug 2018), bloody disgrace. My new Consultant does not come from the area I live in and although she sees me at a Hospital near where I live she cannot authorise referrals as she is based in a different NHS region, and is classed as a visiting Physician. I had to go be detective and finally found out she had asked my GP to refer me to 4 departments for investigation to rule in or out a Neuropathy. I now have a Pain Clinic appt this month and I had an OP Appt at Human Genetics on the 6th of Feb past. However, I had no idea when I attended this Clinic on 6th Feb that it was meant to be a combined one with a Neurologist - well guess what the Neurologist could not attend??????? From there it is only this week that the Dr. at Human Genetics has taken up my cause mainly due to me having seen him in 2001/2002 when I had my initial diagnosis of a Metabolic Myopathy. He phoned me at home 2 days ago to say he has written to a Neurologist with an interest in CMT who I will see at my home Town Hospital, which will make things a lot easier for me. Just so happens she is the same Consultant my adult son sees. I have now been able to trace my referral to my local Hospital and should have an appt within a week, not to say it will be a date next week, but it is progress. My original Doctor in 2001 was at that time my Boss, so he was fantastic, he did suspect I may have 2 conditions running alongside each other, but he hoped not, looks like he may correct now though. Having worked in the NHS for 24 years before I retired I do understand how slowly the wheels go round and know exactly what patients feel like waiting. I know there is no cure for either one or both conditions, however the Human Genetics Doc has confirmed I definitely have a muscle disease so at least I know that diagnosis was not wrong, albeit it might have a different name than first given. After all this time I am actually looking forward to seeing some of these Docs. Plus, my bloods are going off again to search for the gene causing my myopathy and this time I am told it will only be a few months, not 18 like the initial ones in 2001, so things have move forward a bit. Sorry for the long message, but it is the only way I know of explaining clearly. Thanks for your support. X

[LoolooLacey2 in reply to beachwine]

Apologies, I never answered your initial question, I live in Scotland on the East Coast. I got a bit carried away with my long post. X

[beachwine in reply to LoolooLacey2]

LooLoo, oh Scotland. Never visited there, but heard it is beautiful. Hope things are going as well as possible. You are probably like me. Every day is pain, trouble getting up & down, blah blah blah. You know the rest of the story. I guess I can sum it up with some days I fake better than others. Hang in there.

Pam

[beachwine]

LooLoo, why not find another neurologist & pain management doctor? I don't live in a big city but there are several neuro & pain docs to pick from. You are more patient than me waiting 6 months. I hope you find helpful docs soon.

[LoolooLacey2 in reply to beachwine]

Hi again, I had the Pain Clinic yesterday am but unfortunately I took ill during the night with a sickness bug, so had to cancel. I just could not believe my luck, but I will get another appt soon. As well as that my referral to the Neurologis has now been moved to the Hospital in the Town I stay in, but wait for it, the Neuro Consultant who saw my paperwork has marked it "ROUTINE" and on phoning yesterday I was told I was 7th on the waiting list and it would be at least 27 WEEKS before I got an appointment. This is just a disgrace. I do understand there is not much they can do for me if I do have CMT but at least if I could get a diagnosis it would help me to cope a bit better. I had no Consultant for 12 years, then in 2017 I finally found a Metabolic Diseases Consultant by chance, but it took till June 2018 to see her. Follow up with her in August 2018, but no referrals to Neuro, Pain Clinic etc until Nov 2018 (3 months to get a letter typed - ludicrous). Finally, referrals done by my GP in Nov 2018 then appt in Feb 2019 was a shambles as Neuro Consultant did not turn up. Since then until now I have chased another appt, but now told Routine and will wait 27 weeks. You could not make this up could you. I feel a formal complaint coming on, but not sure where to direct it so many mistakes being made. Watch this space for more of the saga. Good job I have a sense of humour. Hope you are well and doing good. Take care. X

[beachwine]

Oh LooLoo I feel so sorry for you. Be like an egg & keep your sunny side up.

Pam

[gunner]

I asked my GP if I could be referred again to a neurologist but was told it doesn't work that way now! I did go see one a few yrs ago but he just said to me, what do you expect me to do about it it's not like I can give you a pill and make you better your waist both of our time but then said he would see me later down the line if I really wanted to, but what would be the point!?? Yet I was also told that I should have a support person assigned to me which hasn't happened. When I was 1st diagnosed I was getting a lot of help but one by one they all have up and now I've been left alone apart from my GP support and diabetic issues, which I was told goes hand in hand with CMT along with depression.