Folicular Lymphoma and FMD

[shandyhaggis]

Hi all

my first post. Its been a difficult and interesting 17 months. Around April last year I became ill, Im normally a very healthy 48/9 year chap who runs, doesn't drink or smoke etc. My illness started after I ran the Manchester marathon I noticed a couple of weeks later that I had a lump on my neck and I was absolutely exhausted.

I did the usual trip to the GP who referred me to someone at the local hospital, he was an ENT specialist who did some tests gave me some anitbs and wanted to see me in a couple of months. During the couple of months the lump went to the size of a tennis ball, I became even worse and over a period of a couple of weeks I went from tired to not being able to walk properly, I would drag my feet behind me, I looked liked I had MS or something like that. I saw the ENT chap again and he did more tests, not really tackling the walking issue at all, just said that well you have a infected lymph node, that will make you ill and tired etc. I got worse and when I saw him at the beginning of august I was on the verge of collapse. I had other lymph nodes popping up and a pain in my abdomen and I could hardly walk without help.

He sent me for a CT scan and a week later I was diagnosed with Lymphoma, I had a lymph node around 13x13 in my abdomen. So, I had chemo from Sept to the end of Dec. The walking issue was investigated by the hospital when I went for my biopsy, they looked for nerve entrapment etc but found nothing. the general advise was dont worry about it wait till after the chemo. So I did. Chemo was rubbish but then I didnt think it would be fun and they put me on very high doses of prednisolone during the treatment which helped a bit but I had to walk with sticks most of the time. On a good day I could walk about 200 hundred yards on a bad day I couldn't get out of bed.

Chemo finished, I started to feel better my walking improved and for about 2 months I was able to walk better. Then in April this year it suddenly got worse again, only this time I had leg jerks and spasms. After a few weeks the spasms moved to my arms and I looked like I was punching the invisible man... all the time. I didn't get very much hep from my gp or anyone in the hospital Id been treated at. The neurologist at the local hospital thought Id had a stroke. I hadn't. I reached out to a neurologist in London UCH who saw me privately (I was desperate for help). He was clear very quickly that I didn't have MS or MND but tested for anti bodies to see if it was related the cancer and invited me back to UCLH for more tests. I went and some more tests later I was diagnosed with FMD. No information on what that was or is just a letter to say you have a FMD. I went back again in August to see him and Ive no idea what he was expecting to do as he isn't a FMD specialist but I guess it was a formality to then refer me to someone else in the hospital. At this point Im still very ill, I had chronic fatigue, couldn't get up, couldn't go out, couldn't walk, couldn't feed myself etc. I also was slurring my speech and couldn't talk properly either,I was a mess:-). The consultant prescribed sertreline and that has helped enormously, after 4 weeks I can walk properly and the jerks have mostly gone but for some reason I still have triggers like crowds, noise I could go on its just weird. Im still tired most of the time.

The FMD appointment with a neuro psychiatrist is April next year which isnt great.

On reflection I think Ive had a chemical imbalance caused by the illness and the chemo and the steroids and its caused all sorts of issues.

Anyway apols for the shaggy dog story but Im looking for advise on a couple of fronts. Firstly is there anywhere else in the country that might be able to help sooner? Secondly, Im self employed and Ive not been able to work for over a year, I am getting better but there is still a long way to go, does anyone know if there is any disability type benefit I might be able to claim?

If anyone else out there has experienced similar then Id love to hear from you

Many Thanks

Andrew

[sarah_1983]

Im sorry to hear about your struggle i would think you could apply for personal independence payment (pip) as your haveing issues with walking and lot of other problems also have you put in for esa if so if your accepted for pip it will increase the amout of esa you will be intitled to and should beable to get help with rent ect if your still unable to work the pip can be a long process but seek help with forms from citezins advice hope you get surpport you need xx

[shandyhaggis in reply to sarah_1983]

Thanks Sarah

Ive not done anything yet, Ive been just too ill for so long Ive just been trying to get through a day.

The whole claim process is a bit daunting but I will look at it when I can muster the enthusiasm

I didn't think about CAB, ill see if they can help

thanks again

Andrew

[Rachh8 in reply to shandyhaggis]

I went to a local charity to help with mine even though I used to work in the benefit system they had invaluable advice and really helped supporting me through the whole thing. They might help with things that you struggle with too and they come along with you to the appts which can be pretty horrific.

[shandyhaggis in reply to Rachh8]

thank you Ill research to see if there is any local charity that can help. I think I just need some guidance with the forms and what I can and cant claim for. Its difficult when its intermittent now but its still very debilitating. A month ago it was a very different matter

[Rachh8 in reply to shandyhaggis]

There's a ratio you have to meet with a fluctuating condition for P I P. I think it might be 50% consistently for at least a year something like 3 months before and 6 months expected ahead. God willing I should think you will easily qualify for higher rate ESA. But these charities if theyre any good know exactly the right way to answer the questions and believe it or not it's so tricky you need to know that.

[Hidden]

My goodness Andrew, what a time you have been having! Your fitness is obviously giving you some stamina to see you through this. You have been so ill and it is going to take a while to recover.

Firstly, do you mean FND? (Functional Neurological Disorder)

Have you been referred for neurophysio? If not, it might be worth seeing a physio via your GP to help with restoring normal movement.

You will likely need a lot of rest to recover. Waiting to see specialists is very frustrating but I have found that even seeing them quickly doesnt really alter the time needed to recover. The more I try to push recovery , the more I end up flat on my back!

Have you applied for PIP ? (Personal Independence Payment) if you havent yet, do lots of searching for advice on completing the form or go to Citizen Advice for help, if you want it to be successful.

Not sure what else you can apply for as self employed person but DWP web site give criteria for all benefits. There is a means tested one for sickness benefit.

Good luck Andrew.

Mel

[shandyhaggis in reply to Hidden]

Hi Mel

the neurologist called it functional movement disorder but Ive seen it called FND as well, they are the same thing. I found this website created by a consultant from Edinburgh that pretty much summed it up. I looked at it when I first was diagnosed and I counted about 8 disorders I had collected. Why? Lord knows. No ones really sat down and worked it through with me yet but I suspect it was due to the stress of being ill for a while and no one diagnosing, then the chemo and the steriods, all have messed my brain and body chemistry.

neurosymptoms.org/

Ive been referred to a neuro psychiatrist in london, I suspect he will be able to arrange whatever treatment he thinks I should have like nuero physio. My GP has been outstandingly of little help. His original diagnosis for a lump on my neck was a blocked saliva gland. Since then they have been of little help and I think they think Ive been more of a nuisance than anything else.

I think your right in that it will just take time and Ive suspected that the wait for April will see me on the road to getting better without any help from the NHS.

Oddly from being in the position where I had no control over the movement issues apart from when I was asleep, since Ive been taking sertreline I only have them around 10% of the time. Also Ive noticed certain trigger points like sudden noise, crowds (going out is difficult) emotional issues trigger it. Its just bizarre Ive never had issues with any of those things before. Ok on the positive its a good sign its getting better but whatever it is changes over time so I just cant see how CBT or physio would be able to help. Im hoping that its just brain chemistry and that it will balance its self over time.

So far Ive seen around 10 consultants, ok 1 of those was my hematologist and I needed one of those and Im just worn out with the process of waiting, anticipating and then just getting to see someone who works in a silo and has no real clue beyond their subject matter.

Anyway moan over. Now I have part of my faculties back together I feel much better but still what seems a million miles away from being able to go back to work. Im able to be a lot more positive than I have been so in a better position to help myself, if that makes sense.

To pass the time and relieve the frustration I started to write a book. At least I can tick that off my cancer list of things to do. I might write about the FND as well, it might help to get it on paper.

What amazes me (apart from the number of people who have had or know someone who has had cancer - that was a shocker) is the number of people Ive bumped into who seem to have some sort of unexplained issue like noise, lights, crowds, twitches, leg pain etc. All undiagnosed by doctors but clearly real and disabling. Im guessing they are probably FND.

You mentioned being flat on your back (Im guessing thats a fatigue type thing?) I had the same for months but Ive found that a sort of home made mediation / yoga thing helps, Ive no idea what Im doing here but its a combination of stretching and breathing. Its calming and slowly helping posture and a bit of strength. Ive not been able to keep my shoulders back for about 17 months, I lost my back muscles, leg muscles etc. Im trying not to jump at it like a bull in a china shop and just doing things that are mildly invigorating.

Thanks for coming back to me its appreciated

Andrew

[Hidden in reply to shandyhaggis]

Sounds like you are mastering your body once more. I suggest physio but this was limited to about 5-6 x on NHS. It helped me balance my walking and cleared my inner ears so nonlonger dizzy. I had to pay for hands on sports physio and massage before I got a loosened off a bit as I kept pulling muscles and ligaments as all my muscles were really tight. Its taking a while but I have not injured pulled any muscles etc since I started seeing physio and I have so much more movement. Unfortunately, cold weather makes me seize up so continuing full body deep muscle massage to loosen me up. It has made me so much better and given me hope that I can get on top of it.

As far as noise and crowds go, have you tried playing music you like, on earphones when you are out? It might help soften loud external noise, especially sudden noise and distract from Busy crowds.

Take care,

Mel 🎧

[shandyhaggis in reply to Hidden]

Hi Mel

funnily I just realised today that the only way I was able to get through the last 'x' number of years working in offices and travelling all over the place was to have my earphones in all the time only taking them out when I went to meetings. Ill try music again, its not something Ive been able to do till the last couple of weeks, even music noise I liked triggered everything.

[Hidden in reply to shandyhaggis]

Good luck with the earphones. Might be worth trying different types of music to see if any work better. It would be good to know if it helps.

Take care.

Mel

[Rachh8]

It took me three years to see a neuro psychiatrist and he was the best consultant I saw and made the most progress. It seems I have low serotonin which fits in with your sertraline prescription. Sertraline didn't help me though amitriptyline did. I'm very interested to find out why these things are my current theory is it something to do with acetylcholine and maybe too much of it. Praying for you anyway you've had a real struggle

[shandyhaggis in reply to Rachh8]

3 years! my word I must have been lucky with 8 months.

Ive always thought it felt chemical for me, it felt like my brain and body was shutting down. Dont know about anyone else but it felt like I was trapped in someone else's body. It was the most peculiar feeling, for 16 months Id say it was like walking with concrete wellingtons on. Or latterly like I was a puppet attached to strings and the puppet master was taking over for the fun of it. I did find it quite amusing at first. Reaching out for a cup of coffee could take several minutes and was quite funny to watch. Often if it didn't work with my right hand my left hand worked. But then for the last few months since I was told it wasn't a neuro disease it made me a lot worse, just knowing that my own brain caused the issue. I feel better now though and Ive come to terms with the fact it was just brain chemistry. If only my Drs had sussed it sooner it would have saved an awful lot of distress.

thank you again

A

[Rachh8 in reply to shandyhaggis]

The symptom of the concrete thing and the slow movement is a symptom of low serotonin which fits in with your response to sertraline. Sounds like you're really on the up too which is great hallelujah

[kjkla85]

What a difficult time you've had Andrew. I'm glad to read your starting to improve. It's a very strange road to be on but I take comfort in the fact that I'm definitely not alone. I'm waiting for a referral to a speech and language therapist and a neurophysio. I too have found mindfulness helpful and am hoping to attend a yoga classes tomorrow (fatigue/pain depending!)

I've got no experience of benefits etc yet. I've currently signed off with sick pay although it's getting towards a time where I will need to find out what I'm entitled to if I can't return in the coming months.

Wishing you all the best

[shandyhaggis in reply to kjkla85]

thank you and good luck with the yoga.

As the chap from cape town said... keep going keep going

Oddly I had speech problems as well, it was like I wanted to speak but the words wouldn't come out. Also when they did it was often slurred. And then just with out warning I was able to talk again.

Fingers crossed for your class

[shandyhaggis]

Thank you so much.

I took a punt a few months ago being frustrated with the local routes and went privately to a neurologist in London who works in UCLH. He referred me back into UCLH under the NHS (thankfully:-)). Its taken ages to get going and April is a long way away but I knew deep down it was probably the right place to be.

I feel a lot better and can walk around normally until something happens and I lose the control of my legs and arms, its like watching bambi walking for the first time I have to joke about it, I feel normal now lots of the time then I get something that I get a massive emotional feeling like falling off a cliff or panic attack and it all goes very wrong. Sometimes its only for a few seconds sometimes I have to close my eyes or just go to sleep. Very odd.

Im trying hard to do the little steps approach but Im not very good at it. Ive always been a full on, if it goes wrong work harder type of person. This is very alien to me and thats probably just as scary as my jerks and spasms.

I went for a holiday earlier in the year to just outside of cape town. We had to cancel several holidays etc due to my illness the year before so after chemo I felt better for a few weeks (before it all went crashing again) so we just went. Anyway I was walking one morning with my sticks trying to make everything go in the right direction and one of the local chaps just shouted keep going keep going. That stuck with me. Simple advice but so true.

thanks

Andrew

[shandyhaggis]

Ah the old rice throwing game. I also tried to stab my wife in the face with a folk once when I was asking her to try some fish. I managed to cut my finger when slicing onions as well. I didnt like knives for about a year they were just too dangerous.

Its all good fun isnt it

[kjkla85]

Thank you! It was actually pilates but I enjoyed it although felt like I'd been drinking all night this morning (I hadn't).

Yes sometimes it takes me what seems like minutes to reply a yes to an offer of a cup of tea - I know I want one but it's like it takes a few minutes for my brain to agree that I want one and send a message to actually say the words! I often stutter and slur too although it's certainly worse when I'm tired. I've had times when I've been unable to say anything. So bizarre.

Great refreshing attitude you have. Best wishes

[shandyhaggis]

Good morning all.

I apologise for not following up with my original post with updates. Ill start with a positive which is my movement issues have for all intents and purposes gone. I still feel them happening sometimes when Im stressed or tired but I can suppress them, not perfect as its still a very weird feeling but at least I can go out with some confidence now and not feel that everyone is looking at me etc (you know the feeling Im sure).

I still get knee drops and I struggle to walk when Im ill. But I think this is more to do with one of my original issues which is an adrenal deficiency. Ive just had a 2nd synacthen test and my results are 'sub optimal' so that means I still need to take hydrocortisone. When I get ill or tired, my body has used up all its cortisol and hence it starts to become weak and cant hold me up when I stand up etc. Now I know I can manage this better. Before hand I thought it was the lymphoma causing the walking difficulties and it wasn't it was probably causing issues with cortisol over demand. Anyway I think my movement disorders were caused by lowered adrenal function which was made worse by over administration of prednisone which then suppressed the remaining cortisol production and hence I became ill. Once starved of cortisol physiologically it caused a chemical imbalance and psychologically I thought I was ill again, the upshot of both is that I became depressed and developed movement disorders.

The main reason for the update is that my 8 month wait to go to UCLH was last week. Although physically Im better I wanted to meet the neuro psychiatrist consultant to understand a) what happened and get some clarity b) what do I do if it happens again c) understand who would be responsible for my medication going forward etc etc etc.

I didn't get to meet a consultant. I met with 3 very delightful ladies who instead told me the reason for the appointment was for them to explain the services the team could provide me. I should have been told before hand the nature of the visit but I hadn't and they apologised for that. Had I known I wouldn't have wasted everyones time and asked to see the neuro psychiatrist directly for a consultation. Alas they couldn't answer any of my questions and they didn't think their program would help so thats it. Im sure if you have severe FND (as I did) then these guys will do their best to help. But an 8 month wait just to see what might be done and then a subsequent wait for treatment isn't really good enough. I know how distressing FND is and having to put your life on hold for that long just isn't acceptable. If it happens again to me? Well I just don't know, I know who to contact and ask for a referral to but where as last time I pinned a lot of hopes on UCLH next time I will just try and fix myself with the knowledge that I might be better by the time I get to the appointment as I did this time.

Ive learned an awful lot about FND over the last 10 months - year or so. If anyone ever wants a chat or a coffee Im based in the midlands Id be happy to say hello.

Andrew