Last reply 5 days ago
Symptoms I’ve faced

I was at work, my left arm and leg went numb. I went to ER was in 3 different times. They did an MRI and a spinal tap them I was diagnosed with MS. It’s been 5 months I deal with a lot of fatigue, stiffness in my arm and leg, a lot of pain. My brain doesn’t work like it used to, It’s hard to recall words and just this morning I kept forgetting where I was driving to. Scary to me. I don’t feel like my doctor is listening to me when I say I’m in pain. It’s hard to fine the correct meds to work with me. I try and stay positive and I do most of the time but when I’m in pain it’s hard to stay positive. I have more responsibility having my daughter back in my life, trying to find the balance and courage to say no when I need to is difficult also. Thanks for having me here a appreciate the support. Thank you. Hope everyone has a blessed day.

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mlgilber1
2 weeks ago

May I ask who’s treating your MS? Like a neurologist or MS specialist? I was also diagnosed in the ER and continued seeing the neuro who diagnosed me at the hospital. I loved her, but a month later I had a bad relapse so she referred me to a MS specialist and they understand MS medications a bit more. Pain was my number one issue when I was diagnosed. I had bad nerve pain, spasticity, and neck and back pain. I’ve tried a bunch of nerve pain meds and lyrica has helped me the most and amitriptyline, but I don’t like the side effects of amitriptyline so I stopped that one. Baclofen helps my spasticity and stiffness which I don’t get often anymore so I rarely take it and I see a pain specialist for the back and neck pain and they give me pain killers which I don’t need as often anymore. I remember I could barely get up and get dressed because I was so stiff and in so much pain so I’d have to take an oxycodone just to be able to get up and do anything. Thankfully a lot of my symptoms have settled or disappeared since starting treatment for my MS, but it took some time. Have you started a DMT yet? Also, I was in physical therapy for a year and that helped with my pain issues as well. I hope you start feeling better!


mlgilber1
2 weeks ago

Also, have they given you anything to help with the fatigue? There’s lots of different medications for it. I was exhausted and tired from the second I woke up and had trouble sleeping. I was put on amantadine which worked really well, but gave me severe dry mouth so now I’m on adderall and not only does it help the fatigue, but also my focus. And I sleep so much better at night the days I take it. He originally wanted to give me provigil/nuvigil which are common MS fatigue meds, but my insurance wouldn’t approve.


msprincess
2 weeks ago

So I tried amitriptyline and I didn’t like it. Then he put me on gabapentine and I’m up to 400 mg but it messes with my head a lot. And I am on the baCLOFEN WHICH HELPS WITH MY WITH THE STIFFNESS. BUT MY DOCTOR WONT PRESCRIBE ME ANY PAIN MEDS. SO I ENDED UP IN URGENT CARE AND THEY ONLY GIVE ME 15 PILS OF NORCO AT A TIME. I JUST WONT UNDERSTAND WHY HE WOULD ALLOW ME TO KEEP BEING IN PAIN. I STARTED ON COPAXON INJECTIONS BUT AFTER THE SECOND WEEK I WAS BACK IN ER WITH A FEVER OF 102, SHAKES, AND A SPLITTING HEADACHE SO MY DOCTOR SAYSD HE DONT WANT TO TRYT ANYTHING ELSE BECAUSE THE BAD REACTION MADE ME WORST AND I HAVENT BEEN GETTING ANY BETTERJUST WORST SINCE. THANK YOU FOR YOUR ADVISE IT IS MUCH APPRECIATED.


mlgilber1
2 weeks ago

I know it’s really hard to get pain medication even when you really need it. Before I knew I had MS or what was wrong I went to the ER a couple times and urgent care, but was never given anything. I even got my medical marijuana card, but it didn’t help me much with pain even though it does help a lot of people. My first neurologist would prescribe pain medication, but when she referred me to the MS specialist they told me they don’t prescribe them. My MS nurse knew I was in a lot of pain so she gave me a script for a month and referred me to the pain specialists and they’ve been great. They even gave me a nerve block which helped and then if I wanted longer lasting pain relief they were going to do radio frequency ablation. The pain was a lot more manageable so I decided against it. Maybe you could see a pain specialist about the pain issues. I hope you feel better soon.


msprincess
6 days ago

Thank you so much for your support and suggestions I really appreciate it.


rel12
5 days ago

Hi @msprincess! 🙂

It sucks that you went through that, just know you can find support here! It is really important to find a neurologist or MS specialist that you feel comfortable with. It may take a while but it will be worth it. You will get a lot of back and forth information but stick to your gut. Remember MS has us all going through weird & random symptoms so make sure to always speak up about them. No one is the same here so make sure you get the help that you need! Best of luck!


stumbler
5 days ago

@msprincess , general Doctors do not have the in depth experience to address the symptoms of MS.

If the Doctor that you refer to is your Neurologist, then you need to find an MS Specialist. Any decent Neurologist would not try one Disease Modifying Therapy (DMT) and then give up. There are about 14 DMTs now available for MS and it is fairly common knowledge that not all of them will work for all of us!


itsmewithms
5 days ago

I second the advice above. Regarding Gaba, I was taking 3 of them (900) and I felt that it did help some of my nerve issues like the spasms I would have and overall I felt better but it seemed like my body was very uneven…every time my blood pressure was checked it was abnormally high for me (usually I’m 120/72 and was in the 150’s/80’s).

I requested of my neuro if I could try the extended release version a Dr friend recommended to me and I think I feel better with that. The benefits without the unevenness…it is called Gralise. If you liked parts of Gaba but not all it may be helpful.

But my Neuro was reluctant to get involved as he stressed “it is not a DMT”…I said, I know but you should help me treat symptoms too, and he relented ;-0 at the time I was pulling off Rebif and preparing to start Ocrevus which I have now done. I think he was afraid I was going to go rogue 😉 I’ve also upped my game by eating better and going to a new PT guy with good neuro training and experience. All good ideas- for anyone.

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