no definite diagnosis but other illnesses excluded

I am a 61 year old male. Despite multiple investigations and two neurologists, my symptoms, which appear to me very close to MS have not been attributed to any specific illness but many things have been “ruled out”! Perhaps someone could tell me if they are likely early signs of MS?Symptoms started last October with sudden onset of optic neuritis in right eye upon waking. Very blurred vision that gradually improved over 24 hrs but with loss of half a dioptre in this eye. In May this year in early morning experienced severe tremor in left hand for three hours. Hasn’t hahhened since. Then, upon awakening, blurred vision in right eye this time accompanied by double vision. Resolved completely in 24 hrs. A second opthalmologist did a complete exam and found a slight loss of colour vision in right eye and blurred optic disc. On both ocassions, I experienced pain, sometimes considerable, in this eye. All other eye conditions such as glaucoma were ruled out. Doc diagnosed optic neuritis. In hospital in Mar had MRA and MRI of brain, eyes, optic nerve with gadolinium contrast. One or two small lesions in brain were attributed to hypertension or age. A few weeks later a Visually Evoked Response test normal. Neurologist found nothing abnormal includin balance and tandem walking test.

Since leaving hospital in May have developed many new symptoms. Firstly, can’t stand with one foot in front of the other without losing balance. Can’t do two steps in tandem without falling. Same every day. Had a period about 6 weeks ago where bladder incompletey emptied and much hesitancy- not due to enlarged prostate- a different sensation. This has now resolved. Bowel motions have shown a change in the last two months with hard, lumpy pellets despite no change in diet. About a month ago dropped a large bottle with no idea that I had lost my grip- a strange sensation. One day suddenly felt considerable pain around my chest midway up ribs to belly that felt like a tightening in the skin or muscles- more on the outside. Never had this before. two hours later came back much worse so I could hardly walk. Severe pain for one hour. Haven’t had it since. Every day severe fatigue often in late afternoon when I can hardly get up then disappears as if nothing happened. Slight sense of dizziness all the time. In last month suffering additionally from periods of anorgasmia.

Second neurologist said all these symptoms unrelated. Thought VitB12 the problem but test negative. Lyme Disease negative. Ordered repeat MRI of brain- showed nothing new. MRI of spine showed degenerative disc and bone changes but nothing related to MS. All other blood tests normal.

Can anyone suggest what I should do next? All symptoms remain without explanation! Neurologist does not think MS the cause. Said balance could be affected by alcohol; was drinking 1-2 glasses wine per day- stopped altogether made no difference to balance problem.

Hi, mmm, a right mixture of symptoms going on indeed!

Some do sound MS like, but neuro needs to see results on tests to bring them altogether to make a firm diagnosis.

have you been given a follow up appointment at all?

I had MRIs (4), 2 EMGs, 2 LP, 1 VEP and oodles of blood tests. Nothing ever pointed to MS, but did exclude other things, like you say.

My symptoms were very PPMS like in clinical presentation.

After 13 years, MS was finally discounted totally. I am currently wearing a label which reads;

spastic parapareis/cause unknown/possibly genetic.

If you have no further neurology appointments, see your GP again and ask where do you go from here.

luv Pollx

Thanks Boudica. I have no new appointment with the neurologist as I assume he can’t tell me anything further! I fogot to say that I have had persistent tingling/burning pains in my hands and fingers and sometimes jerking sensations in my legs; sometimes this happens in my sleep. It happened recently during my sleep and my feet felt extremely cold at the same time.

Quite often I seem to suffer from “Restless Legs Syndrome” which comes on for no reason when I am sitting resting.