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Really Long Post. Please read if you have time. I'm not getting any answers from my doctor.
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Yovanova posted:
Hello,

First of all I just wanted to introduce myself as I haven't been on this site for years.

I've had RRMS since I was 21 and I will be turning 40 in a few months. I would say that the first 13 years my symptoms were pretty mild and I recovered pretty quickly from them. Some I needed prednisone but for most of the symptoms, I recovered on my own.

In 2006, I had a bad attack which effected my whole upper body. Numbness, pins and needles, severe muscle aches, stiffness and severe coordination problems. Treated with prednisone and that lasted two weeks, but I still feel the pins and needles every day of my life for the past six years.

Up until 2010, I had mild symptoms.

2010 - numb from the waist down right down to the bottom of my feet. Severe pain as if I was being tortured. No exaggeration. I was walking like a turtle becuase of the severe stiffness and balance problems. Treated with prednisone. That one lasted 5 weeks. Until this day, I can't walk longer than 10 minutes without feeling tired.

2011 - Whole right arm right down to my hand and fingertips were numb and extremely stiff. I had no control of my arm and hand and had to constantly look for it because I couldn't feel it. I needed help getting dressed and cutting my food, etc. I couldn't use my hand at all. I had to learn how to use my left hand. That one was starting too so I only had 3 good fingers on that hand. I was using one hand for 2 months and I am still recovering. My leg was a little numb too and my balance was off. Couldn't wear heels. Again, I was treated with prednisone.

My fingers are still numb and my arms still feel achy and stiff. I have been on disability since September.

I've been taking Avonex since 2004 and my doctor wants to change my medication.

Anyway, based on the information I provided and in your opinion, does it sound as if my MS has progressed to the next stage and will my symptoms continue to get worse?

Getting info from my doctor is like pulling teeth. He's extremely busy and I am really worried. Can you please help?

Thank you!

Jackie
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pharmacogirl responded:
Hi Jackie,

I think I would want an MRI to compare to my baseline or past MRIs. Obviously you are having increased symptoms and increased duration of symptoms. I know MRIs are done sometimes to gauge the efficacy of treatment meds. I guess if it was me I would want to know the extent of progression if that is what is going on.

I think you should see your neurologist and ask the same thing you are asking here.

Sorry you are having so many flares...I am right there with ya...Hope you get your answers and feel better.

Dot
 
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Yovanova replied to pharmacogirl's response:
Hi Dot

Thank you so much for your reply. I had an MRI done in January an my doctor hasn't reviewed my results yet. I've followed up a few times and nothing. I feel helpless right now.

I would love to go back to work but can't right now. I'm afraid to go back in fear of another bad flare up which dibilitate me again. It's not fair to my boss to always be calling in sick eventhough she understands and has been very supportive.

I guess all I can do is keep hounding my doctor until I get some answers.

Thanks again!

Jackie
 
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Tat2Kate responded:
Jackie-

The fact that your doctor (whom I'm assuming is a Neurologist) hasn't given you your MRI results in 3 months is a BIG sign that you need to find a new doctor ASAP.

I've had MS for over 11 years and only saw a regular Neurologist. He never took the time to go over my MRI results and when I would ask about what's causing this symptom or why is another symptom getting worse, he would say, "Because you have MS." He would never walk me through the images that came back from my MRIs.

My last MRI was September 2011. It was of my brain, C-spine and L-spine. My comparison MRI was in 2009. I have been off all "therapies" since 2009 when at the time I was taking Rebif and read that the makers of Rebif didn't even know how or if it worked. To me, that's medicine based on theory with no long-term scienctific data supporting it's long-term use and what it may or may not do to the rest of your body.

Not satisfied with the answers that my Neuro kept giving me and how I was being treated as a human being, I decided to set out to find a Neuro that specialized in MS and only MS. I didn't have to look long and when I made the appointment, I didn't have to wait months. In addition, he was closer to me than the other Neuro (which was great because traffic in the Northwest suburbs of Chicago can be nasty.)

I saw him about two weeks ago and he did an extensive physical exam and even walked my husband and I through the images from my most current MRI. He was surprised that given the fact that I'm over a decade into the disease, I am doing amazingly well. I've no new lesions in my brain but very few new lesions in my cervical and lumbar spine. He did point out that I have pretty bad stenosis in my c-spine (neck) and that that could also be causing my balance and gait issues. When asked if my other docs pointed it out and I said no, he was shocked. They typically only see stenosis of this severity in the elderly. I'm 33.

I've been in "remission" for at least 2-3 years but I've had new symptoms crop up and other old symptoms worsen. That's because the MS had already taken its toll on that area of my body.

I am not an advocate of all the MS treatments that are out there. I prefer to only treat my symptoms and keep my brain active with my own kind of therapy (word games, puzzles, etc.) and keep the rest of my body active by going to physical therapy.

My older sister, who also has MS, has tried just about all the treatments out there, except for Tysabri and that pill. She is no better and keeps getting worse. She'd still rather see my old Neuro instead of seeing someone who specializes in MS. She believes that doctors know best even though YOU ARE the expert of YOUR body.

Personally, I seek out another doctor because it shouldn't take a doctor 3 months to give you your results. That's just not right. You have to be your own advocate and fight for your health and well being.

Best wishes for a speedy recovery!

Kate
 
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pharmacogirl replied to Tat2Kate's response:
I agree with Kate...makes no sense that your doc has not read your MRI yet or followed up with you. Find and MS specialist. My neuro was perfectly nice...but he seemed a bit dismissive and basically said, they ruled everything out but MS, but he was not going to do anything else.

I had my internist refer me to an MS clinic this week when my speech started to get funny...I want someone who knows what they are talking about.

Get another doc...

Hope it all works out!
Dot
 
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katiaariel responded:
I understand what you are going through. I can't type a lot due to the numbness in my fingers but I wanted to write to tell you first off it is time to get a new Neurologist. Find one that UNDERSTANDS you. I fired two and I finally found one that I really like!!

Good Luck!!

Katia
 
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Csewhappy responded:
Hi Jackie,

You don't mention if you are on any medication for the awful pain that you are in. You've only mentioned the DMD and the Prednisone for flares, as necessary. Are you not taking a regular medication on a daily basis to combat the pain?

Have you tried any of the various medications that are available for the neuropathic pain that you appear to be describing?

There are ones that help with the spasticity, such as Baclofen (and others) AND there are a range of medications, many of which are used in the prevention of seizures, which help to calm down the messages of pain the damaged nerves are sending. Neurontin is one of these, for example, and Lyrica is another.

I have been diagnosed with Transverse Myelitis in my C-spine and the pains that you describe are so similar, including the notion of being tortured, it is so severe.

I am on Neurontin and, for me, it's worked wonders . All individuals vary in what works and what doesn't, but for me, the Neurontin removes the pain, relaxes the spasticity and calms my tremor.

If you are not on anything to treat your pain, or if the issue has never been addressed, it's a travesty! Your GP may be aware of some treatments for neuropathic pain - if s/he agrees it could be the cause. If s/he feels uncomfortable prescribing something, ask her/him to get more information from the Neurologist.

You can continue looking for another neuro, in the mean time, if that's what you choose ... which sounds like fair advice!

Good luck to you - you should not have to suffer like this.
Best wishes,

Carol
 
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Yovanova replied to Tat2Kate's response:
Hi Kate

Sorry it took me long to respond. I had trouble signing in.

I was thinking of finding another doctor too. He's a great neurologist and works out of the MS Clinic but I'm wondering if he's going to retire soon because he's elderly. He's always been so responsive in the past. He even called me at work once to discuss my symptoms and I was surprised.

My husband doesn't want me taking the drugs either. He said I was doing better without them and he thinks it's poisoning my system.

I personally don't like the flu like symptoms I get from the Avonex.

Thank you so much for your reply Kate! I wish you all the best!
 
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Yovanova replied to Csewhappy's response:
Hi Carol,

I was on Gabapentin for over a year but my neuro stopped filling my prescription without reason.

When I saw him last November he said he wanted to change my meds to Gilenya. I currently taking Avonex. I have not heard from him since.

I am considering looking for another neuro.

Thanks for your reply Carol and I wish you all the best!

Jackie
 
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Yovanova replied to pharmacogirl's response:
Hi Dot

I agree with Kate too. I am getting fed up with my neuro too.

I might make a change very soon.

Thanks for your response.

Jackie
 
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Yovanova replied to katiaariel's response:
Hi Katia

My fingers are still numb too. I`m making a lot of mistakes right now as I am typing this. I know how you feel.

Thanks for the advice and I am considering firing mine too.

All the best to you.

Jackie
 
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Tat2Kate replied to Csewhappy's response:
Carol-

I CAN'T live without Neurontin/Gabapentin. Otherwise I'd have to cut off my left arm. The drug takes away the burning and cutting sensation I've had there since my diagnosis almost 11 years ago.

I'm also on Baclofen but that does nothing for my spasticity issues. I'm also on amitriptyline and have been on 30mg of Vaium throughout the day - now that helps my spasticity and what I call my "Parkinson's moments" - the uncontrollable and very uncomfortable movements of my arms and legs. I haven't had those uncontrollable movements since being on the Valium. But boy-o-boy when I first started it, I whas a happy drunk (and I don't drink) one night and after going to the bathroom and washing my hands, I remember trying them on the towel bar and i was kinda just hanging there hugging and smiling like an idiot and the next thing I know, I woke up in the bathtub, legs hanging over the edge and everything. Scared my hubby half to death and I hurt my neck something fierce, but once my body got used to it, it's a major help.

I also take Tramadol for pain. Vicodin and Oxycontin (the real stuff) do NOTHING for me. It's like taking half a baby aspirin. Regular ol' Tramadol, the same kind you can give your dog for it's aches and pains, is the only painkiller that works for me. So strange!

I hope everyone reading these posts know they're not alone out there and that there are people who understand.

Take care, all!
Kate
 
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mtking55 replied to Tat2Kate's response:
Kate

I have had MS for 3 years now and can relate to the same issues you were having with your first neurologist. I have been getting worse with no help from my neuro. He keeps pushing the Tysabri which I do not want to go on. I am very sensitive to medications. I have been to Mayo and Northwestern where they both confirmed my MS from the MRI's. I did not want to travel to the city Chicago so found just a regular neuro in the burbs who is the one pushing the Tysabri. He acts like it is no big deal. I am like you and just want to treat my symptoms , healthy diet and Physical Therapy. I was hoping you could tell me the name of the MS specialist that you found and like since we both live in the same state.

Thanks

mtking
 
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Csewhappy replied to Tat2Kate's response:
Hi Kate -


Sorry for the delay in replying, I've been away over Easter.

I love your sense of humour

I feel the same about the Gabapentin - I don't quite know what on Earth I'd do without it ... I'm already fretting slightly, as my body seems to have adjusted to the highest dose and it's not quite as effective as if was (but it is still pretty amazing for me).

I'm glad that you've found remedies that work for you and thanks for your post.

Best wishes,
Carol
 
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katiaariel responded:
Jackie -

Well first off, you need to fire your Neurologist!!!

Prednisone is NOT something that they should be giving you all the time!! Geez I bet you now have a appetite!!

Have they tried giving you the IVIG - IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3—4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases. I started getting major flare ups and it seemed to help. I agree it is time to get another MRI, you are suppose to get one once a year!!

I hope this helps! First step is to find another Neurologist!!!!

Hope you feel better!!! My prayers are with you!!

Katia


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