Seeking information for my mom

[formymommy]

Hi,

We are dealing with severe MS deterioration at this point.

My mom was diagnosed with MS when she was 22 and is now 67. Unfortunately she has been through a lot with her health. 10 years ago she had throat cancer and was treated with radiation treatment. Due to all of the long term problems that has caused her MS has had to take a back seat. Now it is driving the car so to speak.

She has been dealing with worsening "hug" or "girdle" pain over the past year. Last week things quickly worsened. The chest pain is now coming on in severe and quick attacks. She has also had swallowing and choking problems for the past few years. Due to long term effects from radiation as well as from MS.

She was admitted to hospital on Thursday. They have run all kinds of tests to rule out other causes such as heart or lung functions. Her attacks are severe enough that I am fearful she will not be able to breathe. Can that happen? Her swallowing and choking have also become worse over the past few days.

We have been trying to seek help for a long time. We live in a small town so there are no specialists here. She belongs to an MS clinic but they have repeatedly said there is nothing they can do for her. She also visited another MS clinic last summer and the doctor said that MS is the least of her problems! Nice eh. Then there was a local pain specialist who basically said it is all in her head and she should try to go off some medications and rejoin life! Unbelievable.

My mom does also suffer from pretty severe depression and anxiety. With all that she been through and then losing her husband just in January she been dealt a pretty heavy hand. The anxiety and the pain are very intertwined. Before her admittance into hospital and witnessing her attacks I wondered if they were an anxiety or panic attack. What I saw last night was NOT anxiety. The nurse also said that an anxiety attack cannot produce that amount of pain.

The hospital only wants to try manage her pain. They will not do anything as far as the MS is concerned, not even an MRI. I feel like she is falling through the cracks. But also wondering if there is anything left to do other than manage symptoms. We know there is no cure for what she is going through. I am trying to even just get a call back from the MS clinics at this point.

She tried Neurontin, Baclofen and cyclobenzaprine with no effect. Right now they are weaning down the Neurontin and Baclofen. They started her on 10mgs of Amitriptyline. The only med that has helped her is Lorazepam. She is now taking that 3 times a day. It actually used to take the pain away but no longer is. I worry about her resistance with that. They also started her on IV steroids last Thursday. She is now taking morphine for the pain. It does fully take away the attack. Her problem now is timing the morphine before the attack really hits. She is able to ask for 5mgs every hour.

We are lost and frightened. I have phoned both MS clinics again and hopefully will be able to talk to someone tomorrow. I wish they would just transfer her to one of those hospitals but have no idea if they will or how to do that.

Is there anything left for us to do here except administer whatever med is needed to manage the pain? Is this late stage MS?

Just looking for any feedback, direction and to hear from anyone that has dealt with this severe of an attack.

Thanks so much

[Jules A]

It sounds really frightening for you both and like you said there might not be anything they can do for the MS so it is largely symptom management. I'm not sure that a MRI would offer any useful information.

The benzodiazepines like Ativan can be a double edged sword because they are very addicting and as each dose wears off can result in rebound anxiety. Opiates haven't been shown to improve function with long term use so I'm hesitant about pain regimens with major doses of them unless of course it is palliative care. Is the hospital talking to you about hospice?

I hope things improve. Please keep us posted.

[AriD]

I'm so sorry to hear what your mom and you are coping with. The doctors must at least consider that this is related to MS since they are giving her steroids. And feel that they may help? Otherwise I'm not sure why they would give them.

Has a speech therapist seen her? You could suggest this. They will do a swallow evaluation to see if it is safe for her to eat and just what is causing the choking. Choking is a high risk for aspiration pneumonia so it is important to evaluate her swallow especially in view of her past medical history.

Also if there is a pain clinic or pain specialist at the hospital try to get an eval by them. They can develop a pain management regime for her. There's no reason she should have to suffer like this. If she us having esophageal spasms the Ativan will definitely help in conjunction with narcotic/analgesics.

I hope your mom finds the help she needs and is able to be more comfortable.

[hunterd]

WELCOME TO MS WORLD FORMYMOMMY!! Good to have you! our members are very knowledgeable and will help out when they can.
"Otherwise I'm not sure why they would give them. "
i believe (and i`m not sure) that drs will readily prescribe steroids for anything related to any neurological appearing condition. steroids are anti inflammatory. any help on this one because i`m only guessing?

[Goldfinch]

Hi OP. Sorry you're here for the reasons you posted.

First thought that came to mind for me was your mention of the MSD hug she is dealing with. I get that on occasion and I can honestly say it is the symptom I hate the worst.

The medical pros you've been talking with probably are doing all they can, even the goober who told her to get off the meds and rejoin life. That one was doing all they could because they sound incompetent and uninformed.At any rate, I find it encouraging they are putting her on steroids. That is what my neuro has done for me when I have reported relapses. The steroids have thus far alleviated symptoms for me, but you must understand that steroids are a double edged sword and she shouldn't be on them any longer than necessary. Also, it is possible that she IS advanced in her MS disease progression, and treatment is going to be limited for that reason if this is the case.

With regard to the swallowing and choking problems, has she received any services from a speech therapist when this symptom reared its ugly head? Speech therapists treat swallowing problems because it requires the same muscles as speech. And there is a certain hope in receiving therapy for this symptom that could have a beneficial effect on her anxiety/depression. If the med pros haven't recommended speech therapy, they should be.

Regardless, there are other treatment modalities that can alleviate her anxiety and depression. If you have access to a hospice organization, consider contacting them and speaking with their chaplain or director of nursing. I am not suggesting this because your mom is terminal. Who would do that? But what I am saying is that those folks are old hands at techniques that calm anxiety and relieve stress for patients, and they will be a VERY good resource for you if you lay out the situation for them. If they can't help you with the anxiety and depression angle, they will know someone who can. Don't worry about it when they tell you she is not eligible for services; Something can always be worked out. You could, for example, hire one of their specialists off the clock to see if a session would help her.

Keep us posted, please. Nothing is more miserable than being in distress and thinking the docs have given up on you.

[AriD]

Steroids are actually only recommended for very specific reasons such as MS relapses. They have many side effects so should never be given unless indicated and the benefits outweigh the downsides. Most neurological diseases don't warrant steroids especially high doses.

[KatieAgain]

I am so sorry about your Moms issues.

End Stage MS? 45 years is a long time to have MS. Could be, but I would not go there yet.

I have read your post several times and it sounds like the Docs are actually doing everything they can with one exception, and I will explain that shortly.

I am glad to see she is on Steroids...that might bring down the inflammation down enough to stop the hug that is causing the pain. The cancer screens of course were very logical. If her cancer was back that would be an entire different scenario.

Morphine...very good drug to help her through the pain.

Her swallowing is a concern and needs to be addressed. Additionally, an MS specialist or a Neuro with MS experience needs to examine her. That is where you come in. Hopefully she has signed paperwork to allow you to be a medical advocate.

If cancer has been definitely ruled out, a Neuro needs to step in a give you a brutally honest assessment. Good or bad...you want to know. It might be she is experiencing a horrible flare and her body is not handling it as well as it would if she was a little younger. But yes, it could also be end-stage MS and only a Neurologist who has throughly examined her can tell you that.

Finally, she might just be giving up given all that she has been through in the last few months.

You as her daughter have a long row to hoe. This is scary indeed...we all will go through something similar at sometime.

I am wishing and praying for the best outcome for both you and your Mom. It sounds like you have been a really good daughter...and I wish I could be there to hold your hand.

[from2344]

Hello, I am so sorry to hear about your mom. You seem like a great person to be reaching out for help for her. I will share my experience with you and hopefully you can get some help or relief from it.

I have had about 3 years where my swallowing has been impaired to say the least it has caused me to get pneumonia several times and last year a collapsed lung. I saw a specialist and had my esophagus dilated twice with no luck. I then had an x-ray (barium swallow through) done where I ate different foods and textures and a speech specialist watched it all go down then at the end of the test she told me what foods to avoid. I then did speech therapy for 8 weeks. I learned exercises to strengthen my muscles and did vital slim therapy that retrained my nerves I have been 98% better since doing this. It is very scary to think your going to choke and the possibility is there so what my family did was they learned the Heimlich maneuver and just them knowing this put all of our minds at ease. Hopefully, you can get to a town where they can do the proper testing for your mom.

As for her pain meds this can make swallowing even worse and slow your entire body down. Morphine is an ok pain med but really it sounds like she needs 24 hour pain meds administered. You could ask the Dr. about a pain patch that would give her 24 hour relief there is a Butrans patch and Fentanyl patches that can be prescribed in different strengths and then maybe she wouldn't have to take pain meds every hour. There is also Oxycontin that gives relief for 8-12 hours which is also a great way to get longer pain relief. Often times another pain med would be prescribed as well for break through pain.

As for the MS hug I haven't had much experience with this but it looks like you have gotten great advice on this site. There is lots of books out there that have been helpful for me my number one suggested book is MS for dummies.

I wish you and your mom the best of luck and you will both be in my prayers.