Last reply 3 months ago
Undiagnosed seen Neurologist need advice

I’m new to the site I live in the West Midlands UK , I’ve had various symptoms since 2015 & only noticed them after a spell on some heavy incorrectly prescribed mental health medication. I’ve had various MRI scans, last year raised possible diagnosis of Cadasil saw specialist who said I definitely don’t have it, then his conformation letter was worded differently ( probably & highly unlikely where the words used) still having symptoms, Long and highly depressing series of events ( or non events) one step forward two back ( sound familiar) additional symptoms, alot seem to match M.s but my Neurologist says I definitely don’t have it, confused depressed ( Also lost parents & other close friends) need advice, desperate for answers, running out of steam, sorry for the waffling.

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cosine
3 months ago

was it XX XXXXXX by any chance lol.Im in midlands too. what r ur symptoms?

 

**NOTE**: Please be careful of naming names to avoid legal ramifications – Admin (Stumbler)


harryhog
3 months ago

Hi, I’m not ignoring you, but I’ve got to go out, I will respond later, but no , not XX XXXXXX btw 👍 erm symptoms, visual disturbances, negative afterimages, tingling fizzing sensation that has morphed into prickling. Giddy head pressure in back of head neck, ( feel like invisible 15 stone person on my shoulders or increase in gravity,worse on standing. Heavy stiff clumsy legs hard to move,seems worse when I’ve stood still a while, also after night sleep the legs aren’t as bad for a few minutes but as I’m stood the worse it gets.
& There’s more, wmhs on MRI hat appear not to have changed since 2016 & partial spine MRI ( should have been full but they bxllsed up) shows..erm??
Multiple bright nodular lesions, possibility of lipid rich hemangioma ? My GP ordered the spine one only had a radiologist report Neurologist not seen that, C’s different hospital, as he ” was” going to do one but changed his MD, I asked why & he said I don’t need one, or a lumbar puncture in his opinion ( which may be correct, I’m not trying to demonize him)

 

**NOTE**: Please be careful of naming names to avoid legal ramifications – Admin (Stumbler)


stumbler
3 months ago

Hi @harryhog and welcome.

Doctors are very reticent at giving a definitive diagnosis unless it can be confirmed categorically. Sometimes, things just aren’t black and white.

To an extent with MS is similar. It is notoriously difficult to diagnose, with various other conditions sharing the same symptoms. The human body, especially the brain and nervous system are very complex and not fully understood.

The only advice I can really give is to keep a symptom diary (https://www.mstrust.org.uk/a-z/diary-symptoms) so that you can provide a full picture at appointments.

Bear in mind that you have been dealing with some very stressful events, which can always play with the body. By the way, I am sorry for all your losses, that can’t have been easy for you.


cosine
3 months ago

@harryhog
Im sorry I didn’t read your post all the way to the end. You lost your parents and friends?


cosine
3 months ago

Thanks @stumbler for saving me from legal ramifications! !!! 🙂


stumbler
3 months ago

@cosine , not you, the Forum. 😉


cosine
3 months ago

@stumbler
ohh Im sorry!!


harryhog
3 months ago

Thanks for the reply @stumbler I have been keeping a symptom diary, and have given an extensive list to go & specialist/ Neurologist,but very glad you mentioned it as I feel like a bloomin hypochondriac alot of the time.
I haven’t been on any medication for 3 years, after it basically put me in mental hospital, but the problem I now find is that professionals ( including my GP who admitted it to me ) are biased when there’s a whiff of mental health issues & tend to blame things on that ( I’ve had swollen legs for instance which I don’t think? Can be brought about psychosomatically?) But my GP admitted to me he had previously thought so,( but tbf they obviously have to investigate all angles) .
But this all started in 2015, I’d just had a change of medication, I’d been advised to stop talking a VERY small dose of seroxat, that I took for panic attacks , ( which after some fantastic CBT had diminished)but for some reason they instead changed it to another med, this made me feel v strange and have distressing thoughts, so I go back & tell them ( as the medication leaflets advise)) the told me to come back later ! & instead of stoping it ( previous GP) they played with doses, uppped & downed them in a very short space of time, then added others, includind a bloomin antipsychotic! !???Which sent me psychotic & I tried to end it all , voluntarily went to mental hospital on the proviso that they would help get me off the meds but they sectioned me & replaced one antipsychotic with another, I was on 5/6 different drugs in the end& then when I finally got out in summer 2015 these symptoms, problems with heavy immobile legs, swollen legs , racing heart/tachycardia ( deffo not panic attacks as I was incapable of having one due to meds) numbness in arms legs, and it’s just gone on from there, with the addition of other symptoms along the way. I’m exhausted with it all , have had to fight every step of the way, first consultant actually laughing at a more personal symptom I had & refused to even do an MRI, things seem to have improved on that front but I got forgotten about by the current hospital & they say they’ve done things they haven’t ( sent genetic test off & actually not , said they wanted spine mri’s then didn’t, then go sent me for full spine MRI independently, but that hospital, it now turns out, only scanned the thoracic spine & missed the rest ☚ī¸, & days turn into weeks, that turn into months & now years… Four& counting, and trying to get any proper counseling is impossible ( on how to cope with my circumstances) everywhere I look on NHS websites it tells me I can go to IAPT & get specific counseling for copying with an undiagnosed condition, but in reality I can’t get the help, not through want of trying,& trying & try. …..you get the picture
I have done as much as I can to help myself, gave up smoking 2 year’s ago, lost 3 stone , try to get exercise which is hard with my giddy head & legs being stiff & heavy etc.
This is partly, why I came on here , I’m so lonely esp after loosing my parents nobody in my very small circle of family/ friends understands( I don’t mean it in a complaining sense, they are sympathetic ( well some are..) but it’s hard to comprehend sometimes when you’ve not experienced a situation.
Here comes the blooming prickles again, out of all of the symptoms so far , its them that are getting me down the most , & I can only see it getting worse) also worried that Neurologist might not be looking into it all properly & if I have m.s. or another illness, I could be missing out on help that could be slowing down the progression.


stumbler
3 months ago

@harryhog , yes, you could be missing out on help. They can’t treat an undiagnosed condition!

If you can articulate the problems concisely, you may be able to get assistance from the Patients Advice & Liaison Service (PALS) team at your hospital……….


harryhog
3 months ago

@stumbler in your opinion, should I try & see m.s. specialist? Or do I wait for the current tests ( genetic test for Cadasil & a Skin biopsy for small fibre neuropathy)
Pals have helping me with liaising with the consultant , but some questions have still not been answered.


stumbler
3 months ago

@harryhog , I’,m not in a position to say whether it’s MS or not.

What I would say is that MS is a notoriously difficult condition to diagnose as symptoms present in various other conditions. It’s very much a question of eliminate the probables
and investigate the possibles. and that’s what’s being progressed.

List your concerns and outstanding questions so you can ensure you get them answered. Don’t let them leave them unanswered.


harryhog
3 months ago

Thanks @stumbler for your advice.

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