Forum

New attack

Hi there, it has been five years since I posted here. I now live in Norway! I forgot about MS mostly! :slight_smile: Is this MS?? what else do I need to have done?

Five years ago I posted about facial paralysis and some other neurological signs. Neuro team called it a clinically isolated incident and brain MRI and lumbar puncture was clear.

Now I have had another attack and it is pretty similar symptoms - left sided facial paralysis with no muscle weakness or problems with voluntary movements. The numbness was all over my head and left arm, also there was a patch on my side. Now I just have altered sensation on the left side of my head. When I touch it it feels slightly scratchy or weird but almost normal.

These are my permanent symptoms - The left side of my mouth goes down and has done since 2009. I am not sure why. Also at that time I developed a clonus in my right leg. That comes on when I get excited or nervous. The thing that will make it go absolutely crazy is if I sing in front of another person. It is like a jackhammer! I also get a big jerk/twitch in my neck about once a day, usually in the morning. Not sure why but that started in 2009 too. I also get loud single hiccups for no reason.

The last attack started with both a splitting headache and a facial numbness. I felt like the blood supply in my head was getting cut off from lying down. I couldn’t wake up until 2pm and rang the doctor, private doctor, A&E and my medical insurance company but they wouldn’t see me. The next day I saw my doctor who sent me to hospital. In hospital they started taking videos of me talking but took my vitals and eventually told me to go home as it wasn’t a stroke.

The next week they took a brain MRI but said since it had happened before they weren’t worried too much. The brain MRI had normal findings.

While this was happening I had more symptoms, tinnitis and visual snow. My whole body feels like an untuned tv. The snow, the tinnitis is wavering in pitch like the tv ‘crackle’ but higher, and my feet and legs tingle too. Tingling in my teeth is constant. While walking quickly I find the tingling really ramps up. I had 2 days of serious brain fog where I couldn’t remember how to use a bus stop, my instincts were leading me but I couldn’t work out how to finish anything. I found these symptoms worse when going to sleep and waking up. Sometimes at night I would laugh and laugh for no reason and then feel very sad and I remember feeling this the last time. I also laugh when I can’t remember a word and feel quite cheerful and euphoric most of the time. A lot of the time I feel unbalanced in bed, or with certain eye positions I feel movement. One night I had a period of 5 minutes where one eye just would not focus. It looked unfocused but not the same as without glasses, this was like looking through a dirty window. It eventually went back to normal. That was when I was having a lot of eye pain too. One time I saw triple. Also I have had some incontinence a few times but it has only been very tiny amounts?? is that an MS symptom?

My symptoms are a lot more noticeable when I exercise and sometimes I get the symptom days or weeks before when exercisng I get it normally, such as the tingly legs, tingly teeth and visual disturbances. A brisk walk is enough to bring it on.

I get a lot of headaches (for years) that come on in the afternoon and the headaches last for weeks or months. This is the pattern of tension headaches. Sometimes the headache becomes pounding if I bend over (bending neck forward) or put my head on a pillow, when I lie on my stomach (bending neck backward) there must be some really bad tension there but nothing seems to work to clear it. I also get slightly more numbness when very headachey or very upset.

The one thing that has never been done is a spinal MRI. I also have a lot of clunking in my neck when my neck is upright, I think it is a tendon that keeps snapping over a bone. I saw a chiropractor but he was no help at all. That started happening in january of this year.

I have also had some attacks of nerve pain in the chest. I was never able to find a cause. They come in bursts every few minutes but last less than a second. They are very painful and this is the worst symptom I have ever had. These attacks last about 6 weeks and I have had 3 or 4 of them. Running has brought them all on which makes me petrified of running long distance, however since it has been 3 years since my last attack I might try again.

hi alenacat

difficult as i’m not familiar with the health service in norway.

what i would say is to insist on some investigations being done.

fortunately i have a great team of doctors, neuros, consultants and ms nurses.

you need medical help, so insist on it.

carole x

Hi, thank you Carol for your reply. The health system here is good and I am lucky that I still have a very good job which I have been doing for 4 years now and I have very good health insurance through that. I also have a very understanding and sympathetic partner/boyfriend.

My last post was written in a very scatterbrained way, I think I was panicking a bit. I wrote it the day after I saw a private neurologist. He just told me my symptoms aren’t normal but was relieved I had already had an LP, he said it was very strange but the only thing he offerered was for me to see an accupuncturist and manual therapist for massage to help the headaches.

I have another neurologist appointment on tuesday 15th (non private) when I booked the private one I had no idea I would get a public one so soon. I will update with any details of what they say.

The non private appointment was very disappointing. I gave him a timeline of my symptoms and ran through it quickly. He examined me briefly and noted that I had very large pupils and at point I had a tremor which he mentioned. He asked me a few more questions but told me all my symptoms were things ‘normal for me’ and things that every person experience. He spoke a bit about migraines but I really don’t think my symptoms fit with migraines. He believed that my headache was a real symptom. He said that my facial drooping was bells palsy and again ‘normal for me’ When I mentioned that bells palsy shouldn’t affect the arm he merely said that when I was examined there was nothing wrong with my arm. I told him my whole arm was numb. He didn’t have anything to say about that It’s very odd to me that out of all my invisible symptoms he only believed my headache. Why did he believe that one and not the others? Why didn’t he say I was imagining the headache? That headache is all in my head? lol I asked about a spinal MRI and he laughed at me ‘we don’t go handing out spine MRIs to everyone’ even though the last neuro I spoke with told me they would scan my spine. I felt like I was being treated more like a tickbox form than a real person, even though I was very accommodating, friendly and professional. I tried not to cry when I left the room but I admit I shed some tears. The best thing I can do now is just wait for this attack to pass as I’m sure it will. But as I told my neuro I am worried about permanent damage, as permanent changes in my body have taken place already since the first attack.

i’d go back to the GP and tell what you told us.

maybe he will re refer you to neurology.

good luck

I couldn’t get another appointment with my GP for a month, so I decided to book one in London with Dr [removed by Moderator] for early March. Luckily both my boyfriend and I have a very well paying job, and with no kids at 32 I am very lucky to only have a 5 year mortgage. So I can afford a bit of private treatment. I am trying to work a way of getting the spine MRI done before the appointment, hopefully they can work it out.

I also saw Dr [removed by Moderator] privately. The man is a genius. You are in good hands!

I DEFINITELY DO NOT HAVE MS! Hurrah! Now I am still trying to work out what I have. As previously I had ‘clinically isolated incident’ but it as it is no longer isolated, I am still trying to get some explanation

I managed to see Dr [removed by Moderator] and also while waiting for that I begged my insurance company for a spine MRI which they okayed (through a neuro I saw for all of 5 minutes) and it came back normal.

Dr [removed by Moderator] suggested looking for a few things and wanted to see my blood test results, CSF analysis, all MRIs and correspondence with doctors which I am working towards getting. He suggested it might be ‘heamoplegic migraine’ if nothing was found. He said it can last weeks so I think it could fit with my symptoms. I will see him again later this summer.

While I was getting my historical blood test results that the dr asked for, I noticed that the B12 was taken 2 years ago and was 222. That is pretty low, almost deficient so I might ask for that to get tested again. I have also taken PPIs since then for stomach ulcer so after reading around, I can be pretty sure it will be even lower now. It will be so awesome if a vitamin can cure my neuro problems AND my headaches! crossing fingers

My doctor is referring me for a headache clinic because awful neuro wanted me to take amytriptiline and my doctor feels it might not be a good idea. And she doesn’t know if it interferes with sertraline/SSRIs which I take every day. He also recommended taking a triptan if I ever got a migraine type headache again. Anyone here got any experience of an SSRI + amytriptiline and also occasionally a triptan?

I was so gobsmacked when my GP handed over the letter awful neuro had sent her! It had absolutely everything incorrect, including my age, he made up a date of my original attack where the day, month and year were all wrong. He also said he did tests he never undertook (I remember he only looked in my eyes and tested my reflexes, I was a bit surprised!) His tone was extremely negative of me saying I was psychosomatic. I told him I took an SSRI for raynauds and he wrote ‘takes sentralin(sic) for anxiety and depression’ :frowning: and no mention of the tremor and large pupils he remarked on in the clinic. Rudeness!

Oh well! at least I have a great GP who wants to crack this, and I found a great neuro in London as well I will see again soon.