Struggling with speech

[bandicoot1987]

Hi guys,

Happy new year to you all!

Haven't been on here for a couple of months but I'm Just after some advice for my partner. Just out of curiosity is there anyone else suffering with speech problems, my partner has had Ms for almost 6 years and no relapses since his diagnosis.

His speech however is getting quite bad and even I'm noticing it more lately.

On top of that he has chronic bppv (vertigo) which only effects him when he lies down on his back, this has actually caused great problems with regards to an mri scan as he can not lie down with out vomiting. The doctor has attempted the epley maneuver but sadly he felt so sick he couldn't go through with it. Medication was also trialed with no success. He's only had 1 mri scan in 6 years so we've absolutely no idea of the progression and he is so long overdue another.

Doctor basically said if he can't lie down they can't help him. I guess there's nothing more to it.

Any advice on the speech, or vertigo? I really want to help him, the doctors are forever canceling his appointments his ms nurse is never available for help, even his own GP told him he didn't really have the time for him when we went in about the vertigo. I don't even know who to go to when we want help anymore. He feels as though he has no professional support and to a certain degree he is right.

Any information /advice would be greatly appreciated 🌸

[greaterexp]

I’m sure sorry about all these issues. I think it’s important for him to get an MRI, and I’ll bet he could do it if they did an IV anesthesia. I have a friend with severe back issues and severe claustrophobia, but she has MRIs using the IV anesthesia. It may be time to consider a different DMT if he is progressing. Has he had a speech therapy consult?

I know medicine does not have all the answers, but it’s way too early to be told there is nothing that can be done. I would push for answers and change doctors if at all possible, or at least get another opinion, especially at an MS center.

Please let us know how you both doing. Be respectful, I always say, but be assertive!

[bandicoot1987 in reply to greaterexp]

Yes I'm going to look into going to an Ms centre maybe to get some answers there.

He's not overly keen on it as we've been told 90% of people there at this centre need mobility support and my partner doesn't need anything as he's perfectly healthy and mobile so seeing other people struggling makes him feel so awful.

For them obviously and for the fear he could be looking at himself in a few years 😕 his ms nurse actually told him to stay away as he's still struggling massively with depression because he can't accept what he has. She feels seeing people like this won't help him. But we've no where else to go and I want him to get help.

I am going to make an appointment with his GP first thing Monday morning and try again.

Thankyou for your kind words xx

[Peruzzot in reply to bandicoot1987]

Actually avoiding the MS center and avoiding people who are farther along in their progression could be very detrimental. Not helpful at all. By avoiding them you're only increasing fears of what might be...rather than getting the treatment you need, and getting the opportunity to talk to people, who are farther along, to get the best tips on how to deal with different things from people living it to continue on with life and all of it's challenges in the best way possible. Take this group for example...many in this group are farther along than me, I've been knowingly battleing MS for about 9 years some on here have been in the battle for over 30 years, they've all given great ideas on different things and issues...and it's given freely from, literally, around the world. When i finally was told "Yes. You have MS." One of my coworkers' wife also had MS and had been fighting for about 15 years at that point. She took me under her wing and gave me great advice about different MS Society websites, explained much better than the neurologist that there is no step 1 or step 2 progression expectations for MS like there are for other diseases. MS is unique to each individual with it. She also gave me some great pointers on how to spot bs. Such as one idiot told me..." Get stung by honey bees to cure MS." Total bs! Don't avoid things/people/places that you think will be uncomfortable because you might be missing out on the best thing for you.

[carolek572 CommunityAmbassador in reply to Peruzzot]

Very well said, Peruzzot

[Kenu]

My best friend just went in for mri and could not lay flat as her back was killing her😫 Her neurologist was way cool about it and has prescribed Ocrevus for her anyway 👍. She knew Toni’s condition as she has been her doctor for 28 years. Nice to have a doctor that knows your pain and works with you to help deal with it. 🙏😊 Ken 🐾🐾

[rjoneslaw]

1st he needs to find new doctors one who will have time for him and listen.

While is searching for new dr he should try and get some pt to help deal with the vertigo and speech therapy for his speech issues

[bandicoot1987 in reply to rjoneslaw]

Yes I'm going to make phone calls first thing Monday morning, he needs help this is ridiculous xx

[Kellygrn]

speech issues caused me to retire early. I use a program on my computer to read outloud what I need to be heard. The state of Texas Rehab dept paid for a speech machine years ago but computers have come so far since then I can do it myself.

KK

[Peruzzot]

As rjoneslaw said...find new doctors. The ones you have now sound like they're only interested in quick easy fixes. MS doesn't play well with quick easy fixes.

For the vertigo issues, see if an ear doctor can check your partner out for any non MS related issues with his ears. Sometimes those can cause vertigo when in certain positions. A colleague of mine had severe vertigo issues and he doesn't have MS. After seeing an ear doctor, there is a specific name for this type of doctor exists I just can't remember what it is, something was wrong with one of his ear canals and it was fixed. The fix wasn't 100% but at least he didn't want to vomit anymore when standing up from a sitting position.

I too have been having speech issues because it feels like someone is trying to choke me. I'm currently seeing a speech therapist and throat doctor who are helping me find new ways to use my throat muscles. One of the things the speech therapist is having me do is sing. It's been helping a little.

[bandicoot1987 in reply to Peruzzot]

Thankyou. Yes we need to get him into speech therapy and at least try something. It's such a shame as this is literally the only effect Ms is having on him. He's completely fit besides this, walking, working, no need for any support whatsoever which is amazing after 6 years!!

I am going to get hold of the doctor again and keep persevering xx

[titanicdoll in reply to Peruzzot]

I have often wondered about singing. I'm a trained singer and have always held onto that as maybe being a help. I know everyone experiences MS differently. I'm terrified of losing my singing voice.

I guess that may seem silly. I've allowed MS to take so much from me. I would just hate to lose that too.

[Peruzzot in reply to titanicdoll]

Keep singing!! Don't let MS take that from you.

[ahrogers in reply to Peruzzot]

I was thinking the same thing in regards to seeing an ear,nose,throat (ENT) doctor as they can help with both benign vertigo and speech. The technical name is otolaryngologist but might just be listed as ENT.

My neurologist gave me Gabapentin for my vertigo. She said if it was MS related it would likely work but if it was bppv it wouldn't. I had tried Dramamine before seeing her and it made me feel sick and did nothing for the vertigo. The Gabapentin has helped a lot though. It is prescribed 3 times a day but I only take about an hour or two before going to bed and only as needed during the day which I have only needed a handful of times.

Valium before the MRI might help. A previous coworker of mine used Valium for her vertigo because the regular vertigo medicines didn't work. Although MRIs help track MS lesions there are people who cannot have them due to metal in their body. Even my neuro told me they are not everything when it comes to treatment decisions. I was having new symptoms but no change on my MRI and we changed DMTs anyway.

Not sure if he is willing to see a psychiatrist/ psychologist to help manage the depression but I think it would make a huge difference. Depression is very common in MS and should be addressed and not swept under the rug. I think the advice to not go to an MS center because it could trigger depression would fall into that. We don't have to see people with disabilities related to MS to think about what can happen to us. I see people walking with canes and in wheelchairs out in public and wonder to myself if they have MS or something else. He will think about this whether he sees it at the MS center or not.

I hope he finds help for the vertigo. It is an awful sensation!

He is very lucky to have someone as supportive as you!!

[bandicoot1987 in reply to ahrogers]

The doctor fears his meds may not be working but said there's absolutely nothing they can do until he has an mri so if he can't lie down for that then they can not help!!!

They won't/can't review his medication until they see results as he's only had 1 scan in 6 years, never had a follow up x

[ahrogers in reply to bandicoot1987]

That is unfortunate that they are demanding an MRI. I would suggest either the upright one if it is available near enough to you or ask for anesthesia.

Finding a way to treat the vertigo would be ideal because it is awful and I am sure affects him more than just for MRIs

Good luck! 🙏🙏

[bandicoot1987 in reply to ahrogers]

He manages it very well in all honesty but mri's are the worst.

He avoids everything that triggers it, he sleeps now with 3 pillows and no longer does lying mechanics other than that he's OK.

We spoke to the nurse about an upright and she said no!!!

[ahrogers in reply to bandicoot1987]

I am not familiar with the upright MRIs. It may be that they don't get good enough images to visualize ms lesions. I know the open MRIs don't have as good quality images as regular MRIs

[bandicoot1987 in reply to ahrogers]

Maybe this is why. X

[carolek572 CommunityAmbassador in reply to Peruzzot]

The type of doctor that was referred to me was one who specializes in Otolaryngology. I was diagnosed with BPPV, and with a specific exercise, I was able to recover. It took well over six months. Sometimes, it can be corrected sooner, but sometimes require a bit of time. The center that has a special protocol (and a chair called Epley-Omniax) that assists with treatment here in New England is called Arrigg Eye and Ear in Lawrence, MA. I didn't go because of extenuating circumstances but did the exercises by myself. Hope all this info helps with the vertigo, bandicoot1987 As for the speech issues, therapy is a good idea. Keep smiling

[titanicdoll]

I'm not sure what may be available in your area, but I know in Las Vegas they have upright MRI machines. They may have been geared more for back injuries, but it seems that an MRI is an MRI. The thought behind was that injuries may present differently when sitting upright vs laying flat. It felt a bit claustrophobic, but no so so bad. It could possibly be an option.

I hope you and your partner can find some good, understanding doctors. It sounds like the ones so far have been terribly dismissive. I'm sorry to hear that.

[bandicoot1987 in reply to titanicdoll]

Oh my God they have an open mri scanner in Birmingham, I need to get him into this. Thank you so so much I didn't know this was even available. Xxxx

[Iona60 in reply to bandicoot1987]

My neighbor has vertigo and was sent to an upright, seated MRI.

[bandicoot1987 in reply to Iona60]

Hi, where was this please. Are you in the UK x

[Iona60 in reply to bandicoot1987]

No. I am in the US. They probably have then on the UK. When she couldn't do the regular one twice, with Valium, they sent her to the upright one.

[sashaming1]

My speech problems result from nerve issues and I do exercises for the mouth, lips, tongue, Also repetitions of small sounds (eg. "too, tah, maw, pin" ...) that require repetition of the mouth/lips/tongue techniques to be used to build up techniques to get the proper desired sound.

[bandicoot1987 in reply to sashaming1]

Do you find this helps? X

[sashaming1 in reply to bandicoot1987]

Yes, for me it did.

[RoyceNewton]

Go to a speech therapist. Find out what you are doing wrong and do the silly but very helpful exercises. Has helped me for years. Vertigo I have no idea.