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ADVICE Does anyone have similar symptoms

HelloThanks for replies very helpful.
As an update I had my first fall in August and was hospitalised for two nights and one night in October. Since then I have had several falls but
just been helped to my feet.
The cause of the falls the hospital said was due to sudden fall in BP.Although normally I have high BP . The GPS were very indecisive
and changed my medications several times. But I am now on 20mg
of Lisinopril 40mg Propranolol and Metformin for diabetes and a daily
75mg aspirin.
The Cardiologist said my BP was high but he would not change the medication until I had been seen by a Neurologist… But in August and October I could get up from the floor unaided and my condition and symptoms gradually worsened from January??
Totally confused and stressed?
GPS totally uninterested. Just say it down to Cardiologist and Neurologist?
Cardiologist says its down to Neurologist
I fear Neurologist will say it is Cardiology.
But thanks for everyones support
Steve

UPDATE

I have had several falls in recent months. I have no body strength and my wife has to help me shower dress and sometimes help me get up from a chair. I can now only walk short distances when I go out for my daily walk and feel very tired and weak all the time. When alone if I fall I stay on the ground because my body has no strength to get up

I have had cardio tests at the hospital and I spoke to a Cardiologist who says my symptoms are not cardio and almost
certainly neurological. I have high blood pressure but he does
not want to adjust medication until I have been assessed by a
Neurologist.
But as a final cardio check he will arrange for me to have a
Tilt Test. There will be a delay because he does not consider
it urgent.
I have been waiting since January for an appointment and
now my June appointment has been postponed until July.
I have been put on the list for a cancellation.

I sometimes have choking episodes when I eat.
I really struggle climbing the stairs at home and
it very stressfful.
I have high blood pressure diabetes 2 (under control with
Metformin?
I tested low for Creatinine (39)
My wife can get me up from bed or sofa but not from the floor.
I have fallen twice recently at home and Paramedics had to
get me up from floor.

Has anyone had similar symptoms?

If not MS what else could it be?

Any advice welcome as I am very anxious awaiting the neurology

appointment

Thanks

Steve

Hi Steve,

I would be careful trying to get a response to your question here. People tend to present with different symptoms to get a definite MS diagnosis as everyone has a different journey. The neurologist is the only voice you should listen to. They will stop you worrying about all sorts of scary trauma… Good luck!

Hi Steve,
Everyone’s symptoms are different. Do you have an MS nurse you could contact? They could maybe arrange an OT to visit who may be able to offer support. Or a physio to help give you exercises to help your strength.

Take care
Jen

Hi there - I had the similar symptoms but the bigger problem was my pride! I phoned the OT for assessment got recommendation for a hoist ( allowing me to transfer, to get in/out of bath), mechanical wheelchair for outdoors and manual for indoors. I bought a manger cushion to get me off the floor when I fall - it lifts me to wheelchair height and I transfer back onto the chair. I’m not saying this for any other reason than to say you’re not alone and it can be made better. My other half is 68as well and I’m not the lightest we had to figure it out and recommend OT for assessment - everything is there and every best wish to you both🍀

1 Like

Hi steve sounds scary for you and your wife. nothing worse then falling and for you not to have any clue as to why.

at least heart has been ruled out. The tilt test is usually for POTS. You stand up and have low blood pressure. Now my sister in law has diabetes and has on occasions fallen when standing, no idea if its connected. She is always tired now and has no energy or strength.

as to MS like others have said MS is a snowflake disease. no two people are alike.

HOWEVER, look at when it started, how it started. Did you have numb legs, feet, etc.

See falling doesnt scream MS. It is a vague thing i have known people to fall because of medication.

May i suggest you get an OT assessment my first thoughts are for your wife, having to help you when you cant get up. O.T. can do all kinds of assessments. I also rang adult social services in my area for an assessment, they were brilliant and put a lot of things in place for me i didnt even know existed.

Get a rollator which you can use to get you up and when you stand do it slowly. Never get pulled up quickly. I have high blood pressure for years so far under control.

You can investigate a stair lift some companies actually now rent them out. I had one in my home it was a godsend for me.

out of curiosity what meds are you on for your BP as some of them can make you feel rotten.

the time waiting soon goes round. in the meantime, do a proper and pricise timeline of events. check your diet also is it healthy?

but most of all i would get support from adult social services and OT to keep you both safe.

xxx

1 Like

Hello Steve

Just as everyone else has said, everyone presents differently with MS. So I won’t reiterate what the sensible posts above mine have already said.

It does sound as though you and your wife are living through a horrible time. Clearly something is wrong and you need to get it sorted ASAP.

I think Crazy Chick has the right idea when she said work up a timeline of events. Just as you’ve done here, write down everything that has happened to you, together with rough dates. When you do see a neurologist (as Gareth said, the only person who can diagnose MS), you should be able to explain every symptom you’ve experienced. Consider if anything has remained as an ongoing problem or whether all your episodes have been fleeting and then improved.

Keep in your mind that what is wrong could be something you’ve not considered, neither neurological nor cardiac.

Best of luck.

Sue

1 Like

Thanks for replies very helpful.
As an update I had my first fall in August and was hospitalised for two nights and one night in October. Since then I have had several falls but
just been helped to my feet.
The cause of the falls the hospital said was due to sudden fall in BP.Although normally I have high BP . The GPS were very indecisive
and changed my medications several times. But I am now on 20mg
of Lisinopril 40mg Propranolol and Metformin for diabetes and a daily
75mg aspirin.
The Cardiologist said my BP was high but he would not change the medication until I had been seen by a Neurologist… But in August and October I could get up from the floor unaided and my condition and symptoms gradually worsened from January??
Totally confused and stressed?
GPS totally uninterested. Just say it down to Cardiologist and Neurologist?
Cardiologist says its down to Neurologist
I fear Neurologist will say it is Cardiology.
But thanks for everyones support
Steve

this could be down to POTS. Or A FORM of Dysautomia. Look up also Drop Attacks, its a real thing. It can be triggered by a few things. You can be just doing something and fall down.

Lisinopril and propranolol are similar. i am on Propranolol 80mg of it have been for years for high blood pressure. but its also good for MS with anxiety and spasms.

I honestly think even if its MS you will have a time to wait for diagnosis a lot of us here had to wait years. the cardiologist is being cautious, but POTS for example is not urgent, they know if it was heart they would be rushing you for more tests. i FEEL for you it is a waiting game. You will soon see the neurologist who may well pass you on like a boomerang, but really your symptoms could scream out different things. Having diabetes too doesnt help. I know my sister in law has weird days with hers.

I know how anxious you must feel it took me 16 years to be diagnosed.

just try and have a life in the meantime you need to put into place safety measures for when you do fall. like i said stand up slowly, maybe use a rollator find out about stair lifts, get active to protect yourself. x