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sdsyd

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Hi everybody! Just wanted to update again and get any thoughts anyone has. This might be long so I apologize in advance.

I dont know if updated since my spinal tap, but there were no antibodies for CIPD, so the neuros felt they werent ready to "hang their head on a diagnosis" OR begin IVIG which apparently has the potential to speed progression of other things.

I had my followup visit with my local neuro last week. He has stated that it is definately progressing, with clonus in ankles which was not there before, also with the slowness in my walking, balance issues and weakness. He does not see "much atrophy". He tested me for stiff person syndrome ( results not in yet) and asked me to call my gp and have some lab work done to rule out other underlying conditions that rarely mask as neuromuscular diseases, specifically certain cancers. He also wants me to go BACK to Colorado in June or July to the ALS?MDA clinc and says the only thing he is convinced of is what I have is rare. He AGAIN brought up ALS, but since its been over a year since symptom onset thiks I would be completely incapacatated by now. He asked if I thought my muscles were"shrinking" and I said yes- I wear different sized EVERYTHING now, even shoes. But I have not had much weight loss. Thats because I have been forcing myself to eat, eat,eat in hopes that it will "ward" off other problems.

I have been taking 2.5 mg valium twice a day and 5 mg at bed to help with cramping. He gave me a new script and told me to take 5 mg 3 times a day and then in ten days to take 7.5 three times a day. The cramping and weakness in wrists are bad especially with prolonged activity and I now drive with my wrists, forearms much of the time.

I told him I applied for disability and was denied and he said to go ahead and appeal. I need to quit my job ( am still working 3 days a week about 2 and a half hours a day) but its becomming dangerous for me and my patients. Sorry, I am not trying to be a complainer and have managed to keep a postive attitude through all of this. I just feel so damn guilty that my hubby has to work overtime and then do extra around here, and now I'll be losing what little I WAS making and really honestly felt I was contributing.

I am running on empty here guys. I am not depressed but very frustrated with this whole thing. I am still actively involved in any way shape or form with friends, family and still serving on the Park Board, but am at my wits end with the medical part of me.

Thanks for reading and caring.

Love,
Cindy
 
Hi Cindy, it's nice to hear from you again, it's been a while. I'm sorry that you're still struggling with a diagnosis, hopefully when you go back in June or July you'll get some answers. We do read and we do care.

Barry
 
Cindy,

I don't know what to say, other than that I care. You have to be so frustrated. You absolutely are not a complainer!

I kind of wonder about the choice of Valium, as it has a higher incidence of depression as an unwanted side effect. I've not experienced this, but have a good friend, who has depression tendencies, and she cannot take it. I'm not suggesting you sound depressed, just wondering if perhaps the baclofen could be better?

Keep at trying to solve it. Its hard to keep going and going and not get any answers, but you have to do it. (hugs)
 
hi cindy.
sorry to hear you are feeling down with everything.
i know its hard and frustrating waiting for all the tests results.
i too was tested for stiffmans even though its extremeley rare and very few neuro's see a case.
i was a fulltime working single mum,active social life and always on the go.
its so hard when you have to take a back seat in life but we can still contribute in little ways.
definatley appeal for disability,i too was turned down first time early in my illness as it can ofton be the case so dont get disheartened about it.
they can get info from your neuro to back your claim or ask your neuro for a letter.
hope your next appointment gives you more answers and hope:)
 
cindy~

I know how you feel, frustrated. I often feel bad when my husband comes home from work and he has to do more and more. I just get physically drained with 3 kids under 7! I find that if I pace myself in the evenings that I do better overall. He will put them in the bath and take them out, then I will dress them and read. He brings all the laundry down, I do it and fold it and he carries back upstairs and I put away. I do it all during the day and my muscles hurt at night. I feel so guilty, I dont even have a diagnosed so it is hard for people to understand what is going on with me. My husband works long stressful hours, so I feel bad. I will do as much as I can and make very wonderful dinners but I am done after that.

I had that thing with my hands in the fall while driving. It has gotten a little better I must say to my relief. Maybe it will for you too. I can drive and hold the wheel now with out my hands feeling tight or achey. Do you have cramps or the achey cramp feeling? I told my neuro that I have achey cramp feeling and he said a cramp is a cramp and it is painful or when your muscle tightens. I havent had that yet I guess.

Have they talked about a new emg to see if there is changes or progression or lack of any? When you said your emg was dirty, in what way?

I wish you the very best.

~april
 
Cindy,

Please don't feel alone, there are alot of us on here that are frustrated with our medical problems.
I think as women we think we should being doing it all. I guess that before the symptoms we were probably
like super woman....... I keep trying to tell myself that its not my fault that this is happening.....
Please hang in there.... Keep up with the disability claim and keep appealing it if you have to.
 
Cindy,

I'm very glad you updated us! I've not heard of Stiffman (Stiff Man?) but that doesn't mean anything (I'm pretty stupid).:smile:

I really feel for you and wish you weren't feeling guilty about any of this; its not like you asked for it. Ah, well, easier said than done, I know...

I ditto the "you're no complainer". You are doing a wonderful job with being as active and involved with things as you are.

Hang in there! The answers can't be far off!

Zaphoon
 
Hey Cindy,
As the person who has to pick up the slack and do it all around the house...I'm not resentful...It's part of the partnership of marriage...especially if you're offering/trying/doing the best that you can WHEN you can which it sounds like you're doing. Staying in an active role will only help your psyche too!

Reapply for that disability so that you can concentrate on finding out what is happening.

Oh...and VENT AWAY...we all DO understand!

Tracy
 
Hi Cindy, the disability thing can be as big as a challenge as getting a diagnosis. I appealed twice, Fort Dearborne denied me everytime because they hired there own specialist to disagree with everything my doctors said! I could not afford a lawyer so i could not sue them and that is what i would have done, my advice get a lawyer! I had a Duke doctor send mine in and they still had there doctor overrule it! Good luck, Sammantha
 
Thanks guys. I feel like a frequent flyer here. LOL. Thank you for letting me vent and your encouraging words. Rose- I am allergic to baclofen, it caused bronchospasms. Otherwise Id be all over it. April, my grip is weakening along with cramps, but yes the muscles do ball up. I have 12 pounds of grip in my left and 30 in my right. Tracy- your words were VERY helpful.

And everyone else just plain old thank you. This place has been a safe haven for me to share my real thoughts.

I hope everyone is is plugging along , I come and read updates once inawhile to check in on all of you!

Love,
Cindy
 
Darn Cindy - was really thinking you were going down the CIDP path (hopefully you still are even though that is not a cakewalk either). Keep plugging away.
 
I had to apply 3 times for the disability before it was granted, so keep trying. I was disabled in an airplane accident that resulted in chronic low back pain. The sciatic nerves felt like a razor blade had been run down the backs of my legs and I could not sit for long without burning pain.
I went the rounds of many Doctors, had some tell me it was all in my head. I said yes it's registering in my brain, where the nerves send the signals. Duh.
I'm sorry everyone has to go thru this type of Gauntlet of ignorance before they get any help. All I can say is I totally understand and pray for the best results for you. May you and your families somehow find peace in the midst of this storm.
 
Cindy-
Don't know what happened to my first reply, but the long and short of it is,
Hang in there girl, we're all here for you, vent anytime you need to!
prayers are with you,
brenda
 
Thanks again. Your encouragement helped me face another Dr. appt. The test for StiffPerson syndrome was negative ( SHOCK!GASP!- haha) My regular gp said she would write her notes better for when I do my appeal for disability- that was helpful. Today I go for a chest xray, mammogram and loads more bloodwork, so we'll wait n see what those turn up.
Apparently in some cases of leukemia,lymphomas,lung cancers, breast cancer- they can MASK as neuro diseases. I am not expecting any of these results to come back positive.

In the meantime, a friend of mine called and hooked me up with Western Resources for Dis ABLED Independence and they are going to help me adapt my vehicle as well as fill out the appeal pppwk.

And April- I dont know exactly what they found in the last emg. I never got the report. Slowed motor recruitment and sensory nerves all ok. One thing and I can remember her saying that she saw areas of what she thought was "patchy" demyelination. I am going to call next week and round up the latest records. Do you guys ask for a copy everytime you go?

I hope everyone has a Happy Friday and a good weekend. I guess I'm back for awhile? LOL

Love,
Cindy
 
I forgot to add that at my neuro appt. he said I have 3 beats of clonus in Left ankle- which is new.
 
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