21 Years and still no diagnosis!

Hi, I am new here and would welcome any thoughts on my problems. In 1990 when I was 25 I had chemotherapy and radition treatment for hodgkins lymphoma. About 6 months after treatment I had l’hermittes (tingling in body when neck felxed). I went to Queens hospital in London and in one morning had an MRI, lumber puncture and nerve tests. All were normal. My consultant for the cancer then told me that 40% of people who have had high doses of mantle radiation will have l/hermittes within a year of treatment. I was also told that it would go away and it did after a few months. 15 healthy years passed and no strange systems. Then one morning in 2005 I woke up an altered sensation in the underside of my left forearm. I saw a neurolgist had an MRI and lumber pucture etc and all were normal. The problem went away after a couple of months. Then in 2008 this altered sensation came back (not numb like a dentists injection) on my left leg and left side of back. When I sat on a cold loo seat it felt hot! My legs felt like jelly and I was exhausted. I felt as though I had the flu without the temperature. The l’hermittes raised its head again also. Doctor refused to send me to neuro as he thought I was suffering from stress. After a few weeks sensation came back to normal and legs felt normal. The only thing I found was that when a I walked for a long time my calf became tight making it difficult for my to flex my foot. Over the next few months the distance I could go before foot problems became less and less.

In 2011 saw neuro again and had MRI of neck and spine. One lesion found in neck! He said it was radiation myelopathy. Tried steriods - no use!. After another year saw a different neuro who thought I definately didnt have radiation myleopathy. Another MRI of neck and spine done and only the same one lesion seen. He thinks I in fact have had some benign form of MS and I have had it for 21 years. The lesion I have is small but because of were it is, it is effecting the right leg causing spasticity in calf and quadriceps. This spasticity is progressivly getting worse even though I am on baclofen. I do not have spasms or pain in the leg just tightness. I want him to give me botox. I have had no new symtoms - just the leg. The sensory symptoms I have had have been in the left and motor symtoms on the right!

Saw the cancer specialist this week for checkup and they have suggested getting my veins checked in my neck as radiation can cause stenosis in veins. This is also linked to demylination / MS.

During the last few months I have been on the MS diet, oxygen therapy, vitamin pills galore, yoga and I am still tripping over my right leg! Any clues greatly appreciated. Thanks

Hello and welcome to the site

I don’t know anything about radiation myelopathy, but a quick google shows that there can be a significant delay after the original radiation before symptoms start and that MRI scans can be normal. So, it sounds to me like you really need to see a neuro again - and ideally one who has an interest in radiation myelopathy.

The suggestion about stenosis and MS is almost certainly a red herring I’m afraid. There is a theory that stenosis is related to MS, but the evidence is piling up that it is not true although there is a clinical study underway in Canada to test it out. So, it may be possible that stenosis is contributing to your symptoms, but it is not a cause of MS.

That right leg may benefit from neurophysio - have you seen one? Your GP can refer you. The other thing that might help is Functional Electrical Stimulation (FES). Definitely worth asking about. Also, if baclofen is not doing much any more, there are other meds you can try (e.g. tizanidine) - perhaps you could get a referral to a spasticity clinic? They would also know all about botox.

Hth.

Karen x

Hi Karen,

Thanks for your quick reply. My second neuro seemed to think that radiation myleopathy would be very evident after 5-10 years and symptoms dont normally go away. I have seen a neuro physio too and tried walkaid but she seems to think that the problem is with spastic calf and quads so walkaid failed to work. She also thought botox would be better but my neuro indicated that botox is only given in extremely severe cases. Has anyone on this forum tried botox to improve gait. My neuro thinks it is probably MS but until there is another lesion they cant diagnose. By the way my recent lumber puncture was clear too as have been blood tests for deficiencies, thyriod etc.

Thanks Moyna

The best place to ask about botox and the like is on the Everyday Living forum - lots more experienced MSers on there.

A spasticity clinic does sound like a possible source of help though - I think they could overrule your neuro, if they thought that botox is your best option. Mind you, it might have to be the neuro who refers you there. Worth asking about it I would think though.

Kx

Thanks so much. I will ask to be seen at spasticity clinic. I will look up that other site too.

Thanks Karen

Moyna x