DO I HAVE MS

[sunset709]

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 today 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 becausehe 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.

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

[greaterexp]

The symptoms of MS can be very confusing and vary widely from person to person. That's why getting a thorough neurological check is so important. You'll probably have a clinical exam, MRI's, possible lumbar puncture for spinal fluid analysis, lab work, and possibly more. A good neurologist should be able to put all the test results together to see what your diagnosis really is. I hope you don't have MS, but hope you get answers soon and can start treatment for whatever is causing these symptoms.

We're here for you as you go through this testing phase.

[sunset709 in reply to greaterexp]

Thanks for your support. I now must just patiently wait for a neurology appointment. Given Covid so many people must be in same position

[greaterexp in reply to sunset709]

I know hard it can be to wait for that diagnosis. I hope you can get that appointment quickly!

[sunset709 in reply to greaterexp]

So do I Thanks for your support

[errolsweet53 in reply to sunset709]

I had a spinal tap and been through multiple MRI's. I have a small blockage in my spine which causes the weakness and other issues. The nerves in my brain are usually coated with myelin, mine aren't. I'm on ocrevus infusion, twice per year, they said it might rebuild them. Hope this gives you a better idea.

[mcknighm]

I’m not a doctor , but it sounds like you need to go to a neurologist. You might need to make an appointment with another neurologist if you’re having a hard time getting an appointment where you live. Good luck.

[sunset709 in reply to mcknighm]

In UK it NHS or private which I cannot afford but thanks for reply

[mcknighm in reply to sunset709]

Best of luck.

[palomino27]

Often times this is a symptom of P.O.T.S./Dysautonomia which can be caused by other high autoimmune antibodies not directly related to the MS. The tilt table test is one of the main tests for it. I fainted during my first one at 15 minutes in 2015. I'm sure it would be much quicker now. There in now a blood test from germany that looks for about 10 auto-antibodies associated with the POTS/Dysautonomia. Another blood test panel thru Mayo too. Insurance covers them now in 2015 I had to pay for them. One of my auto-antibodies is to the potassium channel. About 7 other positives too. I'm now in a power wheelchair after being stubborn about getting one. Even have fallen and broken my hip and tailbone. But the wheelchair is a blessing in disguise. Can actually do so much more then I have in years....

[sunset709 in reply to palomino27]

Thanks I will look into pots and have tilt test when I get appt

[mrsmike9]

The neuro will be able to help you. There are other things that can affect you in similar ways. Stay away from "Dr Google" as you can scare yourself silly! Document everything so when you are finally able to see one you won't forget to tell them things. Also have someone with you for the appointment so you can have verification of things said. Better yet, have them take notes!

[sunset709 in reply to mrsmike9]

Thanks

[sunset709 in reply to mrsmike9]

Good advice Thanks

[agate]

I agree with what others have said. There are definitely other disorders besides MS that might be causing your problems. And COVID-19 is indeed making it difficult to get appointments--but that situation might be easing somewhat due to the recent changes in the guidelines. In the meantime, you might be able to help your condition somewhat if you give close attention to your diet and sleep--making sure you're getting the nutrition you need each day and trying to get enough sleep. I hope you can get some answers soon.

[sunset709 in reply to agate]

Thanks

[sashaming1]

FYI: Things with similar conditions as MS

nationalmssociety.org/Sympt...

[sunset709 in reply to sashaming1]

Thanks have emailed them

[sashaming1 in reply to sunset709]

I hope you were able to learn things with the attached website.

[sunset709 in reply to sashaming1]

Thanks I emailed them

[lbenmaor]

Steve,I'm so sorry you're having such a hard time.

I'll pray that you feel better and get the help you need.

Leslie

[sunset709 in reply to lbenmaor]

Thanks

[lbenmaor in reply to sunset709]

You're Welcome.

[Frances_B]

Has your Vitamin B12 been tested in recent times since you have been having these problems?

[sunset709 in reply to Frances_B]

Yes I have had all the blood tests so mow must wait to see neurologist Thanks

[kdali]

I’ll agree that your wait sucks, Google is pointless, and there could be a list of problems similar to what you have described...but I’m concerned with how you’re making it through the day 😱 This may be obvious, but have you arranged your home so it’s safer/easier while you wait? Do you have more strength after you have rested for a while or at a certain time of day? Is it hot when you walk outside? The crew here has a lot of experience with assistive devices, ways to manage debilitating fatigue, and tips to prevent falls.

[sunset709 in reply to kdali]

No I am weak at all times of day. My daily walk is getting shorter. A year ago at least 10,000steps now a slow 3000 steps with stops. On the lounge floor I have cushions water a urine container and cushions. I have now had paramedics out twice in recent weeks when I was so

weak my wife could not get me up from floor on her own. A raised toilet seat has helped a lot.

But I feel so vulnerable and guilty that I am putting so much stress on my wife.

I have not fallen so much recently as lost my balance. On the beach green last week I chucked bird feed and lost my balance and it took two guys to get me up.

I am confused because the cardiologist says it is neurological and advice from MS forum and

MS charities say its not MS???

It is a very anxious time

But thanks for your support.

[sMilEs_N_bLuE_sKiEs]

Hope you get answers sooner than later boss!As much as I didn’t want to hear the diagnosis that I had MS; the knowing eventually eased my mind...

We are all here for you!

[sunset709]

Thanks everyone

I am weak at all times of day. My daily walk is getting shorter. A year ago at least 10,000

steps now a slow 3000 steps with stops. On the lounge floor I have cushions water a urine container and cushions. I have now had paramedics out twice in recent weeks when I was so

weak my wife could not get me up from floor on her own. A raised toilet seat has helped a lot.

But I feel so vulnerable and guilty that I am putting so much stress on my wife.

I have not fallen so much recently as lost my balance. On the beach green last week I chucked bird feed and lost my balance and it took two guys to get me up.

I am confused because the cardiologist says it is neurological and advice from MS forum and

MS charities say its not MS???

It is a very anxious time

But thanks for your support. ks everyone.