Desperate for some pain relief!

My husband (68) was diagnosed with PSP November 2015 (it was neurologist #7-ugh!) but was diagnosed with Parkinson's-like symptoms since 2012. He has started to deal with the double vision, fogginess, falling, some trouble swallowing (at times), constipation, and other PSP related issues. He has so much pain to the back of his right leg (hamstring/inner thigh area). It is in one spot and the pain is unbearable! The pain is always on his mind and he gets some relief from it when he is laying in bed. We have seen a chiropractor, tried acupuncture, injections (spine L4/L5), massages (gets two massages a week), stretching exercises, water aerobics, ice packs, heat pads, medicine patches, ointments, natural teas, etc. We have tried it all and we are now so desperate that we are traveling to San Diego, California (we live in South Texas) and have scheduled an appointment for stem cell injections with StemGenex. If this can get rid of PAIN and maybe improve other symptoms, it will all be worth it. We know it won't cure PSP but just need some kind of relief from the pain or any PSP related symptoms. I know a couple of you mentioned stem cell injections and the pain relief your loved ones received so I have hope that this will help my husbands leg pain. I welcome any advice from those of you dealing with PAIN along with PSP! Praying for some relief.

PSP is changing our lives every day! I don't know how this could of happen to such an amazing, kind-hearted and loving man or to anyone! It is awful! Trying to stay positive, strong and willing to try clinical trials, etc. 

NSH

23 Replies

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  • Hello ! I'm so sorry to hear of the pain that your husband has been suffering. The following is going to sound as if it's coming from left field and may of course turn out to have no bearing on your husband's situation. I wouldn't be writing to you if a close male friend of ours had not been in a very similar situation pain-wise to your husband's. Chronic pain in the same area, if I've interpreted your post accurately. Went to a number of doctors including Chiro. without success. A friend in Manhattan took him to see a Chinese doctor ( the friend of his is Chinese ) and with very little effort and a hands -on examination, our friend Dean was diagnosed, correctly as it turned out, as having an inguinal or abdominal hernia.  (I don't remember exactly as this was approx. two years ago.)  From there he had the appropriate diagnostic tests done and saw the appropriate surgeon at a very reputable hospital that he has dealt with in the past, who confirmed the diagnosis. Surgery was performed to repair the hernia, resulting in total relief of his pain. So please rule out the possibility of a hernia being the cause of your husband's pain before you go the stem cell route. How something  like this ( if a hernia is indeed the cause ) could be overlooked and misdiagnosed by many doctors seems unbelievable , but I feel that it is an important enough possibility that it is worth investigating.

    My sister has PSP and I have learned from and appreciated the people, both pts. and caregivers who I've met on this site. I realize that the possibility I've raised may seem very farfetched to you. Even though I'm an RN, I did not have the knowledge base to come up with the hernia possibility when Dean informed me of the long term chronic pain that he was having. He had been using heating pads, pain meds, and also had some relief when lying down. After he told me what he'd learned , it was such a surprise, though it made perfect sense. Who knew ??!! Obviously not the numerous doctors who he'd visited prior to seeing a doctor who just happened to have the knowledge/experience to make the correct diagnosis .

    So I wish you both well and hope that you consider following up with the avenue of inquiry I've raised . I think that it might, just might, be worth looking into. Sometimes we get lucky. And if that's not it, at least you'll have ruled out that possibility !

    Yours truly,

    Elise ( LI, NY )

  • Elise,

    Thank you so much for your advise and I will follow-up on that one. I am never giving up on finding my husband some relief for the pain part of all this or maybe it is not PSP related at all. A hernia has never come up in any of our visits so it is worth a try. Even when he lays down he is clearer in his language and says he has little fogginess. The pain is also relieved. Thanks for the tip.

    The stem cell injection will be his own stem cell from his stomach area. 

    I just hope something makes a hit soon. Terrible to watch my guy suffer so much.

    Thanks,

    NSH

  • Ok, Just a minute ago I went to a post that gave an article about Nuerodegenerative diseases and stem cell therapy. I don't even know how I got there!

    The post was from CGC1 and the article was:

    Omental Transplantation for neurodegenerative Diseases.

    ncb.nlm.nih.gov/pmc/article was the site.....

    I was excited about this site for you but I have to agree carehope, maybe someone has overlooked something.  Western Dr's follow the script anything difft, and they will most likely miss it....just ask the myriads of patients here that have been misdiagnosed!  I had to tell B's doctor what he had .... Try  the chinese dr. ....If you wanna go to CA maybe swing by Chinatown NY first......

    AVB

  • Carehope, Could any of the procedures be used to reweave conic throat pain? We have gone to an ENT in Birmingham, and they did a scope down the throat that turned up nothing. I did give up because I did not know were to turn after that visit. He can only drink his meals through a straw. He is sleeping most of the day and night now days. He can barely whisper when talking. His mind is still good enough to type out what he needs on his voice box pad. He has throat pain 99% of the time. Just looking for some advice.    

  • Dear mthteach,

     Chronic throat pain ! I can imagine how difficult it must be to be to live with this ! All that I can think of is that considering the enormity of all of the systemic effects of PSP , since they stem from the neurological damage that it causes, that the most obvious cause to point to would be nerve demyelination . But Neurology is not an area that I can claim any degree of expertise in, though I bet  that we're all abundantly more qualified about what PSP is about than most of the MDs, including neurologists out there !

    I desperately wish that I could offer an effective approach but at this point , I'm stumped. I think that it might take a 'few and far between' specialist to figure this problem out. I wish that I was taking my sister to her neurologist for her latest appt. sooner so that I could ask him about your husband's painful throat. I think that her next appt. is not until mid April. I hope that someone can figure this out before then ! Irregardless, I will definitely ask him about this problem.

    Please let me/us know if /when you get to the bottom of this . I would be thrilled to hear that your husband is feeling better re: his pain !

    Do you have any multidisciplinary medical centers out where you are like the Lahey Clinic or the Mayo Clinic ? Those types of centers seem to specialize in the tough and unusual health problems, the ones that aren't typical. PSP certainly qualifies !

    Wishing your husband relief asap from his throat pain and if I find out anything I will definitely get in touch !             

    Yours truly,  Elise                                                                                               

                                                                                                                              

  • Carehope, we have tried so many doctors to find relief that we do not know where to turn now days. Thought about going back to the gastrologist for another scope down the throat. They turned up nothing before. He was a heavy drinker in years past. That might be contributing to the pain, but the ENT doctors find no proof/reasons for the pain. His diet is liquid type where he can drink his dinner through a straw. Thank you for your advice. 

    We did go to an acupuncturist early on with no relief. Not sure if there is a Chinese doctor to try in our area.  

  • Hello mthteach ! Question - Has your husband had any CT scans done of his head or/and neck ? Another possible diagnostic tool ? 

    Regarding Chinese Dr's, I think that it was coincidental that that the doctor who diagnosed my friend's hernia was Chinese ; probably just more competent and experienced overall than the doctors he'd seen previously ! It does seem though that sometimes doctors of varying origins approach problems differently. Hope that this painful puzzle is solved soon and there are answers that will include relief !   Elise

  • carehope, he has had PET scan and MRI of the head. He was in a research study in Birmingham, AL for PSP. They did lots of scans at their cost.

  • Well, one thing's for certain !! Your husband couldn't have anyone more dedicated to caring about and for him than you !  Despite everything else, nothing is more meaningful and  irreplaceable than that ! 

  • Dear NSH,

    In my original note to you I forgot to wish you and your husband success with the stem cell injections. Hoping to hear good news related to treatment. I'm sure that everyone who read your post sends their support and best wishes across the miles ! Good luck !

    Elise

  • Thanks CareHope.

    We are scheduled for stem cell 4/19/2016. I have to keep reminding my guy that it won't cure PSP but might improve some of his issues. If it can improve one, I will take it!  I will keep all my new PSP friends in the loop. Thanks for the support! 

    NSH

  • I'm so sorry that you have to be here on this site.  You are right . Your husband does not deserve this....Non of us do....however as you know PSP is not choosy . I am wondering if your husbands pain is PSP related.  At this point who cares, right.  I only say it because If you are looking for the source of the pain, you may not find anything about PSP.  And quite frankly, I am ignorant to Stem cell research.  I do not know the ambient characteristics of this method of healing.  I am all for it though.  And you certainly tried everything I  would have tried....I didn't see Physical therapy on your list which may be soemthing I would have used.  At  any rate good luck to your husband.  if you find a connection or you explore this method for specific PSP cleansing, do tell us the outcome....we're all needing some relief!

    AVB

  • Hi AVB

    We have had about 5 rounds of PT and one of those was just for balance and gait. No major improvement but he is scheduled for another round starting in April. I think I just need to hire someone to come over a few days a week and do private yoga. He has no self motivation but will participate if I ask him to. I'm never, never, never giving up on my guy! I got say that so that I stay positive! LOL

    Thanks for the support. 

    NSH

  • God bless you for not giving up! Use all the ideas you have.  B got llittle out of PT for PSP.  Actually I think I got more ways to help him than he got to help himself.  Did you know that if your man is having a hard time getting up out of his chair (falling back) tell him to look down at the ground, and put his hands on floor as if to pick soemthing up, then stand; he will have better success at getting out of chair! I t works on B!  I also learned once he's going down...there's no stopping him.....I may have taught myself that one....Anyway good luck with using all of your resources.

    Whoa.....I think I might have another resource for you , if you haven't already been there....I JUST was there,,,,and it talked about two kinds of hernia that sends pain in the groin and downward.  I went to MedlinePlus ...actually i put in "leg pain from a hernia" and it sent me to MEdline plus etc.  Not so uncommon as one might think....easily overlooked by a dr not checking the groinal area.....check it out it may be alot easier to fix than you think....

    AVB

  • AVB

    I'm going to follow all your tips. No one has ever checked his groinal area. I am so grateful that I have all of you because you all get it!! No one wants to hear me talk about our struggles except my wonderful momma! Bless her heart and she is too busy at times. No one understands this awful disease except for you all. I am teaching medical care people about this illness! It is terrible. Every time I sign on to HealthUnlocked, I learn something new. Thank you AVB and everyone else who responds to my questions.

    Nikkie

  • My wife had the procedure in May 2014.  Didn't do much for the brain, although it may have slowed down the progression (only God knows).   But it did eliminate all pain she was having in her right calf, ankle, and toes, which was stemming from a degenerative disc (L4/L5).  The doctor who administered her stem cells in Florida (Delray Beach) suggested we give her a shot of her stem cells in her lower back.  They also gave a shot of her stem cells up through her nose (that one hurt!).   And the majority of her stem cells went back into her via an IV in the arm.

    Remind them of my wife's procedure (I'm sure they kept notes).  Her name is Kimberly Heins.   During our visit, we met their President/CEO, Rita Alexander.   I'm sure you'll get to meet her there.  Remind her of our visit and procedure.   We were their first PSP patient.  Surely they haven't forgotten us, although they no longer call and check to see how she's doing and any improvements.   Supposedly they were going to continue to monitor her and call us at least quarterly.   

    Best wishes and I'll be praying that all goes well.    Enjoy beautiful Southern California.

    Ketchupman (aka Dan Heins)

  • Wow Dan, it's nice to have someone who has experienced this....how does this procedure help with pain?

  • Thanks Ketchupman (Dan),

    Rita Alexander is the President and CEO. We just received the STEMGENEX packet in the mail and she is on the front inside cover. If this can help my guy with pain, we would be so grateful! We are booked for April 19, 2016. I have been video taping my husband walking, talking, eating and sleeping so that I can see if there is a difference after the stem cell injection. I have hope that this will help at least one of the many issues we are facing with his leg pain or PSP (I have my doubts that the pain and PSP are related). Keep you posted.

    We did add a few days prior and a couple of days after the procedure to enjoy beautiful Southern California. Thanks for all the support and especially for the prayers. 

    Nikkie

  • Stem Cells not only go after damaged cells and try to repair them (as in the case with the buildup of tau on the Supranuclear part of the brain), but it's also anti-inflammatory agent, which is probably what has helped Kim's back. Their founder had RA and feels like she is in remission  and I believe RA causes a lot of inflammation  

  • Thanks Dan! 

    Hope, hope, hope!

    Nikkie

  • We also flew down a few days before the procedure (at their Florida site) and we had some nice beach time. 

  • for what it's worth, my dad had terrible leg spasms in both legs - that was due to a high dosage of Sinemet (carbidopa/levodopa) but stopping it led to him not being able to talk/eat/drink so changing Sinemet is risky in some patients - best wishes

  • Sammy90210

    My husband has not been able to tolerate any PD or PSP type meds. It just makes him feel so sick, dizzy and foggy. The doctor as removed those meds completely. I wish he could tolerate but no luck. We have tried them all. Ugh.

    Good luck,

    NSH

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