I need some advice

[Buckley123]

Hi guys sorry to write again as some of you may be already aware I have had many tests for ms.

I had a brain scan which showed a lesion is apparently not the correct area for MS that some of you know just as a quick recap my mum had ms And unfortunately had lost her battle a year ago

My lumbar puncher was negative my ace blood levels are twice what they should be

I’ve had optic neuritis twice Currently on 60 MG steroids tapering down 10 MG a week for six weeks I have a lot of electric shocks going through my body but my main concern is my back muscles and my neck muscles are becoming very very weak which as I know from my mum is not necessarily a sign of a ms or not one that she had anyway

I feel like my eyes and extremely tired all the time I really just don’t know what’s going on at the moment I would’ve thought five days on steroids so far I don’t feel a lot better my muscles are still burning coming week I don’t really know what I’m asking I can tell it’s not in this due to their position of the lesions even though my mum had it I have every other side of it I just wondered what you guys think they’ve said it could possibly something called neurosarcoidosis much as possible I feel on likely I don’t know if you can give me any thoughts on it I would appreciate it a lot.

I’ve attached my last letter I’m just so confused 🤷‍♀️ xxx

[mm1527mm]

Maybe a lumbar puncture will help diagnosis. Sorry to hear about your mom. How old was she? Was she on any dmt? Sometimes the lesions do not yet appear on the mri. Another opinion may also help until you get answers. Blessings

[Buckley123 in reply to mm1527mm]

Thanks lp was negative

My mum was 47 when she passed xxx

[Hidden]

I'm sure I don't have any sound advice for you. I been told by my primary doctor, ms after my mri (head only) and he referred me to a Neurologist. I asked him about steroid treatment while I await my appointment with the Neurologist and he said no (not until he was able to discuss with the Neurologist). That was almost 3 weeks ago and have been reading about steroid treatment alot.

I have left a message with my doctor and the Neurologist that I wanna try it to try to at least ease my numbness and inability to walk, while awaiting my Neurologist appointment on March 10th'

I will be on the phone tomorrow morning with both of them (hopefully).

Hopefully you can get some relief or answers. You know what you are feeling. Don't give up. Prayers.

[RoyceNewton]

Ok start this off with I am not a doctor of any sort. That said you are seeing a neuroligist aren't you.? Perhaps one with experience in ms might be best. With your history I might be leaning that way. When I was diagnosed long ago I went to the neuroligist stating I had ms that made testing somewhat easier. My GP (PCP) who had a sister with ms told me that was what the problem was. Perhaps a new Neuroligist with that attitude might be a good idea.

There are other things that it might be beyond ms, so accept their testing. If it does turn out to be ms, relax there are treatmentgs these days.

Good luck whatever you decide to do.

[Buckley123 in reply to RoyceNewton]

Thanks Royce I’m not worried ! My neurologist is a ms specialist

He believes it isn’t but my symptoms seem to be going more and more that way in his defence since it all started !

I’ve been checked for lupus and sjogrens ms mg everything really ! Sarcoidosis is a possible I’m glad I’m on the steroids due to my eyes but I don’t want to blindly treat something I know there are alternative treatments that I would like to try

Can I really believe two months after my mum passed to the day this started x

[RoyceNewton in reply to Buckley123]

very oddd, but you seem to be on the right track to get an answer, it just might take time unfortunately

[Buckley123 in reply to RoyceNewton]

It’s all odd isn’t it 🤯 my neck is so weak ! I fit a bit of everything but nothing as a whole 🤦🏼‍♀️😂😣 thanks for your reply x

[sashaming1]

I think that infused steroids, if then your symptoms got better, would be able to confirm MS. But, there are, I understand , other diseases that cause lesions. I also understand that "Normal" MRIs don't check the gray brain matter which could be "hiding" some lesions which could be causing your issues.

[Buckley123 in reply to sashaming1]

Yes ! I have read this ! Do you think 60mg is enough for a week to taper down 10mg a week for 6 weeks? Maybe six day’s in I’m jumping the gun wanting to feel better xx

[sashaming1 in reply to Buckley123]

When my brain injury started going downhill while I was still in the hospital they wanted to rule out MS effects. I understand that they gave me steroids (I don't know the amount but must have been intravenously) to see if my condition improved. Because it didn't, they ruled out MS.

[Midnight-Blue]

Hi! You seem to be going around in a circles & grasping at “straws”, so to speak. I “spoke” to you yesterday. Not knowing where you live, is there a “teaching” hospital near you? That may be an option you had not considered. I had been referred to one a couple of years ago & I was treated with respect & utmost care + they found out what was wrong with me when other doctors hadn’t a clue. Just an idea.

[Buckley123 in reply to Midnight-Blue]

Yes I live near London I have seen the best according to my research though forums ect I’ve paid mainly privately and some nhs

I seem to be going around and around cc

[Midnight-Blue in reply to Buckley123]

I am so sorry about the loss of your Mother. I’m sure the grief you are feeling is an added stress with what you are going through. What I haven’t seen & I question is if you are going through this alone? A friend? Husband? Significant Other? Of course you are not alone here but what about where you are?

[Buckley123 in reply to Midnight-Blue]

Thanks I’m okay I have my partner and three children ! Just a little worried for my future I don’t want my children to see what I did with my mum !

So a chance to fight would be great but I believe you can’t fight the unknown xx

[Hoofprints]

Sorry you are struggling with finding answers. I'm not clear who you are being referred to in the letter you have posted, but it might be worth seeing a specialist in sarcoidosis/neuro-sarcoidosis. I know two people with sarcoidosis, but they do not have neuro-sarcoidosis (although one at the outset, one did have weird brain symptoms mimicking a mini-stroke). What I do know is that both had raised ACE levels, and this was part of the core indicators for sarcoidosis. Is it worth you researching online to find a sarcoidosis patient charity and phoning them for advice? They might have some useful information as to who you could see, and whether there are other patients with similar symptoms to you. It's tricky with these autoimmune things as they do overlap. Both the people I know were treated with steroids initially, so I don't think you are being treated unusually if sarcoidosis is suspected. This must be exceptionally difficult for you having lost your mum, and having lost her to a neurological condition. No one can ever replace your mum, but you have lots of good wishes and heartfelt support from those of us on this forum, so you are never as alone as you may feel. Good luck on your journey 💐

[Buckley123 in reply to Hoofprints]

Thanks I have seen London’s leading sarcoidosis specialist and he thinks it isn’t so I went back to my ms specialist who says it is xxx

[Hoofprints in reply to Buckley123]

Oh goodness! Caught between two specialists. That's not helpful. Has anyone checked you for vasculitis? There are lots of different types and you can get them alongside other auto immune conditions such as lupus, MS etc. as well as on their own. Some types affect the CNS and can present like MS or ME. I'm sorry- I don't know what else to suggest, but if you want to pursue this as a possibility, I can recommend getting in touch with vasculitis.org.uk. They can suggest vasculitis specialists if your existing doctors won't investigate for vasculitis. I'm sorry but I don't know what else to suggest to help right now. I wish you good luck.

[Buckley123 in reply to Hoofprints]

Thanks for your reply !! I appreciate you reaching out I’ve seen lupus specialist in London lupus centre and he said yes to uctd and then said no when my blood didn’t show anything xx

[Hoofprints in reply to Buckley123]

Why not try the vasculitis route then? At this stage, you have nothing to lose by trying 💐💐 Just please don't give up hope

[Buckley123 in reply to Hoofprints]

Vasculitis isn’t that lupus ect xx

[Hoofprints in reply to Buckley123]

No, but it is something that can occur alongside lupus, or on its own as a discrete condition. Have a look at vasculitis.org.uk and go to the patients stories section, Viv Dunstan's story in particular as she has a CNS version of vasculitis. It can mimic MS and ME.

[Brindisi1]

Sorry about your mother and your loss. S

47 is very young

You must be young also

Consider neuro opthalmologist for your eyes since you had optic Neuritis if you can get good referral for a good one.

Hope your journey is fruitful soon.

Peace.

[Buckley123 in reply to Brindisi1]

Thanks yes she was young I’m 30 last week so she had me young more like a best friend ❤️

Totally lost without her only now I can appreciate what she went though a little bit.

Both my neuro one at the royal free and one at charring cross are neuro ophthalmologist 🤷‍♀️🤯 one is a sarcoidosis specialist and one a ms specialist 🤦🏼‍♀️ I just don’t seem to be getting anywhere tbh I don’t fit anywhere really xx

[mrsmike9]

Holy cow! Reading through all of the above it sure sounds like you are following through with everyone possible. All I can do is send best wishes and pray for an answer for you soon.

[Sweetheartonvdayl in reply to mrsmike9]

You are right all we have left is to put your faith in God or whaterer your higher power is. I am finally asking Jesus Christ for to grant me strength since I was was taught by my parents not to pray for myself but only for other people.

,

[Sweetheartonvdayl]

I have MS for 25yrs with mom being diagnosed right after my birth. Back then there was no treatment but steroids which I gave her injections of. t

my mom quickly converted from RR to chronic progressive. Thank God we all have medications that can help us to delay progression. I take tecfidera 240mg twice a day. If my wbcs keep going down the last med I can take is ocrevis which does not lower count

[throughtheyears]

Try seeing a cardiologist and rheumatologist, my friend was treated for years for MS (doc never did a spinal tap), only to find out later she never had ms after all. She had a leaky heart valve that was causing quick bursts of mini strokes and leaving lesions behind on the brain, hence showing up on the MRI.

[Sweetheartonvdayl in reply to throughtheyears]

Holy Cow!

Is she doing ok now???

Drs are really guessing (most of the time) giving YOU the dx, of MS.

I never spoke to anyone about my MS, leaving me " to deal on my own for 25& half yrs.

I always like to get 2nd opinion..

How are you doing???

God Bless

Lisa❤

[throughtheyears in reply to Sweetheartonvdayl]

Lisa, please do seek the second opinion. Unfortunately my friend passed away some years later from sepsis. I often wonder if she was not more susceptible to disease because of her immune system being altered unnecessarily. Take care and please keep us updated.

[Sweetheartonvdayl in reply to throughtheyears]

Hi. throughthelyea

[Sweetheartonvdayl in reply to throughtheyears]

Thank you . I just knew it was MS w/my mom having had the same symptoms, which is unusual for 2 people having the same symptoms.

So far, I've had neurologist & 2 MS specialists.

Please take care of yourself w/ the COVID -19 virus.

I'll be praying for you& all the compromised people.

God bless you & yours.

Lisa❤

[anetap4545]

Your mum died from ms, how