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Been in Limbo 25 years Now !

I think i should win a prize for my patience in limbo land. 25 years ago I developed l’hermittes. I had just finished radiation treatment for hodgkins lymphoma. I had an MRI, LP and VEPs done at Queens Square London and was told all was clear and the l’hermittes was due to the radiation. I forgot about the scare and got on with my life. Then in 2005 I got numbness down one side of my body. Saw a neuro and had MRI and LP - both were clear. Numbness went away. In in 2008 I had what I thought was an MS attack of weakness, slight footdrop when I ran, fatigue and numbness. GP said it was not neurological and after blood tests said it was Hasimotos hypothyroidism so I was put on thyroxine. After 6 weeks on the thyroxine I felt better and felt the GP had been right. Then a year later I started to trip over my right foot after a long walk. Over a period of months the foot problem was appearing after shorter and shorter walks.

In 2011 I eventually saw a neuro who said he thought I had MS but after LP and MRI said it was due to the radiation I had had 25 years ago and not MS There was slight atrophy on my spinal cord. This was not there in 2005.

In 2012 I had a second opinion and he too suspected MS. He said the radiation theory was totally incorrect. I had another MRI and LP . But said he could not dx me as LP was still clear and there was not enough evidence on MRI. He then said that I had suffered transverse myelitis in 2008 and it may become MS although less likely as LP was clear. Anyway from my reading there should not be progression after complete recovery after the attack. The fact I was 95% fine a year after the attack. Anyway I was told this and discharged from the NHS in 2013.

In Oct 2013 my right arm started to spasm - it only ever lasted 2 seconds and occured about 5 times a day. I tried to get back into NHS to see my neuro again but was going to have to join the 6 month queue to get back into the system. So I went back to see the private neuro again who still said it was radiation myelopathy. Now last October I had another scan done at a private clinic. My neuro said there was no change in the MRI. I asked for a copy as I have copies of all the others. He said he would post it for me. Anyway he did not bother and I didnt chase it up. Now 2 weeks ago I was in that private clinic with a friend and I decided to ask them for a copy of my report. She brought it up on the screen in front of her and said that she could not give me a print out without authority from consultant. She also happened to mention “Did you have thyroid checked?” - I said “No, why?” Her reply was then "Oh the radiologist said that on MRI it looked enlarged, but dont worry you neuro must have felt it was irrelevant if he has not had it checked.

I contacted the neuros secretary asking if the could send me the report. After a week of no joy I emailed the consultant and still no joy. I really want to find out what the radiologist said as I have found on the internet that Hasdimotos Hypothyroidism can very rarely lead to Hashimoto encephalopathy which can in turn cause lesions on the CNS. The other symptoms are enlarged thyroid and evidence of inflammation on LP. There was evidence of inflammation in my LP althoubg I was OCB negative. I have also read it can be an MS mimic - especially PPMS.

Treatment is steriods, plasma exchange and immunotherapy. Prognosis is good if caught early - althought I doubt I am in that category!

Moyna x

Chuffin ell Moyna!

All this must be driving you do-lally!

I know you been thrown hither and thither, as regards trying to get a clear and true dignosis.

Like me, maybe you never will, eh?

My current diagnosis is still incomplete.

Perhaps we should start a forum for long term limbo landers!

pollxx

Thnx Poll,

Yep it 25 years ago now when I had my first MRI for suspected MS. I did have a relatively free period for 15 years after that. A slight blip in 2005 and then the wheels started churning in 2008 and going faster in 2011.

People on here have been quite blunt with me by saying I should just accept my disability and stop searching for answers. To be honest I think they are lucky to know what they have got especially when they are given drugs by the doctors to fight the disease.

Moyna xxx

Moyna

The neurologist you have seen are they an MS neurologist or general neurologist?

I ask because although most of the general neurologists I have seen have been ok, I have noticed there has been gaps in their knowledge about MS.

Yeh, Moyna…some can cope with not knowing why their bodies dont work right. Others, like you and I feel on the outside looking in, dont we hun?

pollxx

Hi guys I for one like you want to know why my body is not working right I am sick of walking drunkedly falling over and forgetting why the hell I opened the fridge mind you the penguins in the pantry don’t mind the icy blast as I stand and stare stupidly into the fridge. I think we all deserve the knowledge that comes with diagnosis don’t we? Sue

Moyna,

I totally take my hat off to you, I just don’t know how you’ve managed to cope! I feel like all the yo-yoing works against me but at least with a certainty of MS, I have a starting point.

You’re a remarkable lady and you know we’re here if you need to off-load. I truly hope that you get an answer in the short-to-medium term as you’ve already had to hang on and try to cope over a very long term!

hugs

Sonia xx

This resonates so strongly with me! I had a bout of this earlier today while I was trying, and failing, to do something about dinner.

Just had a bowl of cereal in the end…

Moyna, I don’t know how you have managed to stay sane I am only about 10 years trying to get sorted and I’ve come close to total meltdown. You can demand a copy of all notes etc through the access to patient notes I can’t remember the phrase I need to tell you but will look it up later today and post it. Any further requests you make to the consultant I would send registered mail then he can’t ignore it. Keep fighting Sue

I`m so glad to read the supportive replies to our Moyna. she has spent many more years than me and anyone else I know, who has set up a more or less permanent camp in limboland.

pollxx

Thankyou all so much for all the support. What ever I have is closer to MS than any other condition which is why I come on this site for support. I have had good tips and advice as to how to deal with things.

I have seen MS specialists. In fact the first one I saw was called McDonald at Queens Square in London and I often wonder if he is the McDonald of the “McDonald Criteria” for diagnosing MS.

Thnx especially to you Poll as you have been a friend to me ever since I joined this forum nearly 3 years ago. You give lots of great wisdom to folk even though you dont have MS. I remember one of the first posts I saw of yours was “I dont have MS any more”. You had so many hits on it as people thought you had cured yourself of MS rather that a misdiagnosis in the first place!

Take Care everyone and Thanks

Moyna xxx

Aw shucks Moyna. I`m filling up, bless you.

We all need as much support as we can get. Living with a chronic disability is a chuff!

luv Polxx