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what should I do next?

Have been to a second neurologist who has virtually ruled out everything: Vit B12 normal; Lyme Disease normal; repeat MRI of brain showed no change two months after the first which was requested because of a second episode of optic neuritis in the right eye with blurred and double vision and slight loss of colour vision. Two months ago severe tremor in left hand for three hours. Tingling or burning sensations in both hands and fingers frequently and jerking movements in legs periodically. Severe fatigue especially early afternoon. Some bladder and bowel changes including incomplete emptying of bladder. Restless legs syndrome frequently. Within the last two months, have severe balance problems which were not present when the first neurologist examined me in May. Can’t stand with one foot in front of the other without falling. Feel there is weakness in ankles as well as balance problems though neuro says only a balance problem. Can’t do more that two steps in tandem without falling though could perform this test perfectly in May. Neuro says bladder and bowel changes (harder stools) and tendency towards anorgasmia all unrelated and not due to MS as MRI of spinal cord showed nothing abnormal.Dropped a bottle on one ocassion without feeling that I had let go. Had severe pain around the chest from waist to midway up ribs on one ocassion lasting about an hour and felt it was more external- in muscles- rather than internal. Suddenly went away.Neuro said if MS hug pain would have been felt in back also. Is that correct?

Can anyone suggest where to go from here as I assume if I get another opinion there is little to go on?

Hi Milano! Sorry to hear that you’re having a tough time. Personally, I would want a referral to see a Consultant Neurologist who specialises in MS and related conditions. Were these guys experienced in this field? Speak to your local authority/ hospital. Find out who the key players are and get a referral to one of them. Good luck.

Hi, it does sound very MS like. But there are other conditions it could be too.

However, I do think there should be follow up appointments. Go to your GP and ask his/her opinion about another referral.

I had similar symptoms to your`s, except I had no eye problems.

I had tests over many years and nothing ever came back positive for MS.

My clinical symptoms were very PPMS like.

After 13 years of tests, MS was discounted and I now have a diagnosis of ;

spastic paraparesis/cause unknown. It is possibly genetic, but there is no known family history of such problems.

I see a brand new neuro next month…I wonder what she`ll think!

pollxx

Many thanks to those who suggested visiting a new neurologist who specialises in MS. The new neurologist looked at the previous MRI scans of the brain and this time said that the lesions present could be indicative of MS and has requested a lumbar puncture.If it is MS, then probably it is Primary Progressive MS as I am 61. I suppose the interpretation of the MRI scans is difficult even for specialists and I was told before that the lesions present were age or hypertension related. I await the lumbar puncture test .

Hi milano

I hope you get some answers real soon.

I found your comments about your lesions very interesting, as I am seeing a Neuro next week to discuss a recent brain MRI where I had multiple lesions that the radiologist says are more indicative of ischemia than demyelination (apart from one odd one). I am 48 and the report did say this was not the result expected for someone my age.

I have been expecting to be fobbed off and my many symptoms ignored, and so find it really interesting that a second Neuro has said that your lesions could be indicative of MS, despite initially looking more like ischemia. This makes me even more determined not to be fobbed off, especially as I have never smoked and my BP is perfect (the 2 main contributing factors for early ischemia, apparently!)

I love this forum!

Hi Purpledot interesting to read your comments. When I had been told that the small lesions on my brain MRI (with gadolinium contrast) were “probably age or hypertension related” I assumed that there was little room for error. It seems that thre new neurologist thinks they might well be the smaller lesions found in PPMS which I believe are smaller than lesions in other forms of MS. I guess MRI interpretation is not an exact science! Good luck with your investigations.

Very interesting, milano. Thank you so much for sharing your experiences.

Good luck with your journey, too! xx

good luck on your journey to be free from any diseases.

Now realize that waiting for a definite diagnosis is very depressing and frustrating. Visited neurologist a month ago who thought the original brain MRI with contrast showed lesions that could be due to PPMS. I am 61. Am waiting for a lumbar puncture in 5 weeks time. In the meantime symptoms seem to have become slowly worse: persistent blurring of vision in right eye with ghost images particularly at short distances, eg. reading.Often pain in this right eye. Already investigated extensively by opthalmologist. Seems to come and go being worse at different times during the day. Yesterday had the worst period of complete exhaustion in the late afternoon that I have yet experienced. So tired that I could hardly get up. Restless legs syndrome almost every night and worse than before. Sleep pattern totally disrupted usually waking at 4 or 5 am and unable to get back to sleep. Does anyone think it is worth informing the neurologist of these worsening symptoms before getting the lumbar puncture? Balance seems to be getting worse- for some time can’t stand with one foot in front of the other without losing balance. Now I feel momentary dizziness and the feeling that I might fall when walking. Never had this before. Other things like Vit B12 deficiency and Lyme Disease have already been eliminated. Feel quite depressed that the symptoms show no improvement and that no certain diagnosis has yet been made.