MORE ON THE KNEE PAIN SAGA

[Sukie427]

I know that I haven't posted for awhile, but this is my husband's and my travel season and despite the white hot razor blades that keep traveling between my left upper thigh and the back of my knee, we managed to go to Israel and Egypt for 2 1/2 weeks in June and on an Alaskan cruise with our son and his wife at the beginning of July. Being with them was joyous. I hope all of you have been well

After we returned from Israel, I called and got tough with my neuro's office as the pain behind my knee has gotten much worse, so much so that I am now on Tylenol 3 and have been for weeks. During this whole fiasco the neurologist never did get on the phone or call me back. The farthest I got was his RN MS coordinator. After 5 orthopedists told me it was neurogenic pain and likely from the MS, the RN told me that the nuero recommends going to a pain dr since it might not be the MS after he told me that it definitely was and increased my Lyrica!

I did end up going to a pain dr, who ordered MRIs of the knee and a special MRI called a neurogram which showed the pelvic nerve plexus as well as all the nerves feeding into the left leg. Results: no problems with the nerves, BUT the knee scan showed a significant area of avascular necrosis of the bone in the knee and the upper left thigh, exactly where the pain is. The dr asked me if I had ever been treated with steroids. After a 25 yr bout with the worst migraine pain imaginable and 9 yrs with MS--well, the answer was "of course!" So it turns out that the "cure" caused another problem. I am going to see a knee surgeon on Tuesday and another orthopod in early August. I may need surgery, or they might be able to ablate the nerve, or I might just have to live with it.

I haven't posted because this pain amd the opiates just made me hit the wall. I had a few personal pity parties, and just felt too tired to fight any more. I've been fighting with my own body all my life. Liver cancer at 19, 25 yrs of horrific hemiplegic migraines, and then MS. I felt picked on and no matter how hard I tried I just couldn't find it in me to fight any more. I am just so tired! And the codeiine, even though it's a very small amount, together with the pain, just threw me into a major tailspin.

But I got up again, and I am back to fighting. Back on my horse every morning, the aquatherapy, and the gym and home exercise. The heat here is oppressive to say the least, but I am back to moving. And I will keep moving until I beat this too, one way or another. I still have a granddaughter to watch grow up and pit bulls to rescue!

God bless all of you. Will post pics when I can get them from my tablet onto the computer. Yes, I could've done this right from the tablet but I for got my password to the internet at home so there it is.

Sukie427

[rjoneslaw]

thanks for the update I glad u had the time of ur life with the family traveling

as for ur pain i hope u find relief

[Sukie427 in reply to rjoneslaw]

Thank you. I am feeling hopeful again. It's when it looks like there is no hope that the downward spiral begins. And by the way, I am firing my neurologist as he doesn't seem to have the time to deal with individual problems. When it comes to the semi-annual MRIs, the Rx's and routine stuff, he's OK but when there is a problem he's not there. NOT GOOD.

[rjoneslaw in reply to Sukie427]

yes run fast

[scouty in reply to Sukie427]

Where do you live? I can recommend a new neuro if you are shopping for a new one.

[Doubled51 in reply to Sukie427]

Wow. It sounds like we have the same neuro. Saw mine last month and he just told me to back in 4 months because it would be mri time again. Every time I mention pain it’s go tell your pain dr. Every time I mention new pain to pain dr it’s tell your Neuro so you just can’t win.

Donnie

[Beckylp54 in reply to Doubled51]

Hi Doubled51

I hear YOU. I get this between neuro and endocrinology. My neurologist has been correct so far. But my Internal medicine doc is not correct most times.

Blessings❤becky

[jimeka]

Suki, great to hear from you. Did you finally get to see the lights? So sorry you are in so much pain, I hope and pray that you get it sorted. So happy for you that you are back riding, one thing I wish I could do again. Looking forward to the pictures, blessings Jimeka 🤗

[Sukie427 in reply to jimeka]

No lights this time, Jimeka. Too early in the year. We're trying to figure where we are going to go next to find them......hope you've been well! I have missed "speaking" with you.....

[SueAB]

Oh, Sukie427! It is so good to hear from you! We, too, were booked on an Alaskan cruise the end of June and first of July, but I have been struggling lately and had to cancel. I am seeing a new neurologist next month and hope he might have something new in his bag of tricks. Hope you get some relief of your pain and are able to get back to your old self soon!

[Sukie427 in reply to SueAB]

Thank you, SueAB. So sorry you couldn't go. Had it been just me and my husband oh, I would have cancelled, but I did not want to disappoint my son and daughter-in-law. It was a struggle to be sure oh, but I really didn't do that much and you can really relax on a cruise oh, so I don't think it did any further damage. Best of luck with your new neuro. I am waiting for a new one as well. I was told that I have to be evaluated according to my records and the clinic will assign the most compatible neurologist to me. Let me know how it goes.

[goatgal]

Go ahead and fire that neurologist but keep the pain doctor who found the cause of the horrific pain you describe. I greatly admire your perseverance and refusal to be knocked down. We put medals around the neck of heroes, applaud them in public spaces, but the real heroes in life are those like you who are knocked down only to rise again, all the while thinking of those they love and feeling compassion for those unable to rescue themselves (like the pitbulls).

[Beckylp54 in reply to goatgal]

I agree with You! But we still have many other heros out there in our world.

Blessings❤becky

[Sukie427 in reply to Beckylp54]

I am not a hero. Not by a long shot. Just a normal (well, that may be questionable) person trying to survive what life throws at me. But thanks.

[pamgarner]

i know no one likes the thought of surgery,but my orthopedic dr I been seeing for my wrist says,medically dr's. are great at replacing hips and knees(my case wrists,not so good). so i"ll just keep with injections,but do it before while you feel relatively ok,sometimes we all put it off too long,when we could be feeling better,good luck to you

[hairbrain4]

Sorry to hear you have been through so much pain for so long. Sometimes I just want to rage on the doctors because they can ignore you so easy. Most of them have no idea what we as MS patients go through. It's so hard to distinguish what is MS & what is not & they don't want to be bothered with trying to figure it out, I have been fortunate to find a neuro that actually cares about her patients. My neuro will only use steroids as a last result because of the side effects. The one I had before her, would give them to any time I asked for them. But glad to hear you are back up fighting again! Prayers for healing your leg pain & endurance to keep fighting!

[Sukie427 in reply to hairbrain4]

Thanks so much for your prayers. Can I borrow your neuro????

[hairbrain4 in reply to Sukie427]

Sure how far from Fort Smith Arkansas are you? I drive an hour & a half to go see her.

[Sukie427 in reply to hairbrain4]

Unfortunately, I live in Northern Arizona so that would be kind of a far commute. It is such a relatively rural area that for any kind of significant neurological issue one must go to Phoenix. Luckily, Phoenix has the Barrows Neurological Institute, which is a world-class neuro center with one-stop shopping. I have an appt. there with one of their MS specialists, and I am very hopeful that she can do more for me than just routine MRIs and prescribing DMTs. I didn't want to go there right off because these kinds of places have a reputation of being fairly inaccessible between appts., but if I am going to be ignored I might as well be ignored by the best!

[hairbrain4 in reply to Sukie427]

Always try to find the bright side of things! Being ignored by the best is better than being ignored by no one.

[Sukie427 in reply to hairbrain4]

Well said!

[Beckylp54]

My prayers are for YOU to bring you the strength to fight this and find relief! Hang in there you have strong inner strength. 💪

Blessings to you❤becky