I've been having a bad run of health lately.
My muscle weakness has spread from my thighs to my shoulders and arms. I had been golfing a bit as my favourite activity (and only one apart from stretching). I can't golf now. Even walking is hard as my thighs feel like they're burning out.
My hubby has myasthenia gravis and when I describe my weakness to him he says that's how he feels. His is much more severe, however. I'm not saying I have myasthenia but I sure can empathize with him better.
My regular pcp is on a long holiday so I saw the locum. That was an exercise in frustration. I wanted her to refer me to another neurologist highly recommended by my hubby's wonderful neurologist. She refused and sent a letter to my old neurologist who, in my opinion, was very dismissive and downplayed all my symptoms.
My rheumy doesn't think the weakness is sjogrens related.
I also had been having a lot of twitching and jerking when trying to sleep. I figured out on my own that taking tramacet along with cymbalta and trazodone affected serotonin too much so I went off it. I asked the locum about another pain reliever and she refused to prescribe anything else.
Fortunately, my rheumy increased my gabapentin to 1800 mg/day which not only helped my pain but also has decreased the night-time twitching and jerking which was still problematic even after going off tramacet. Obviously neurological but my old neuro didn't think this was significant.
Added to this is my long 4 month wait from my diagnosis of cervical cancer, unknown stage due to all the bleeding during my colposcopy, to get my cone biopsy which will tell them what stage it's at.
I know cervical cancer is very treatable and slow growing but considering I had my last pap 1 1/2 yrs prior with no abnormalities, this is a little faster growing than most. To get cervical cancer there usually is a history of abnormal paps which get ignored by the patient or a long time since the last pap. It's affected my intimacy due to even more pain and the constant spotting.
I also wonder if it's contributing to even more fatigue and lack of energy.
I'm also scheduled for a colonoscopy as I've been having very bad bowel issues. On a good note, however, when I went to emerg for 6 days of horrible constant diarrhea, the ER doc was actually really good and prescribed trimebutine, a new drug for IBS. I've had 5 days of relief from months of symptoms.
I work about 5 hrs/day, self employed, and that takes all my energy. I hate not even to be able to cook supper and I've learned to tolerate sandwiches now lol.
My heat intolerance makes it hard to enjoy our beautiful summer.
Oh well, we carry on. Thanks for listening!
Oh me heavens, I'm so sorry about your trials! I can relate to some of that! I have been complaining about muscle burning and fatigue and now day time twitching and everyone ignores it. My emg was normal. Neither rheumy or neuro comments about it!
Today I have an appointment with gyno oncologist since I am positive for vain 1 and things have progressed down there.
I feel your frustration!
Have you considered seeing a gynecological oncologist?
Starting in 1990, my mom started having irregular pap smears. Her gyno?s comment was but I can not see the cancer. I kept telling her that she should get it checked out. Finally in 1998, he sent her to a gynecological oncologist. He diagnosed cervical cancer and she had to have a radical hysterectomy. Because her gyno waited too long, she could not have the cone biopsy.
As a result of the hysterectomy, she ended up with lymphedema in her left leg.
If it was me, I would have sued the gyno.
Her cancer returned in 2011. She had not had a pap smear in 10 years or any of the follow up testing. It returned in her bowel. She had to have surgery and now has a colostomy plus she has a kidney stent. And, she had to have radiation and chemo. So far, so good.
Daisy-Oh my. Do you live in a rural area...that is, limited physicians? Posts such as yours take me back to when I was your age...and on the brink of menopause (well--peri-menopause) and started having all this crazy stuff...and doctors would say "fibromyalgia" and send you on your way. It infuriates me that doctors don't really listen AND LOOK. We LOOK at our doctors for answers...and in a pleading manner. Wish they could "see" us. I hope you have as good a day as you are able...and that you can find a knowledgeable physician in all your necessary fields of need very soon.
Doctors usually don't recommend pap smear after hystorectomy. Thank God my new gyno went of a hunch and did one at the last minute thus finding the vain1. I agree, a gyno oncologist is a must. Hoping for good news at my appt.
Anyone who has had a hysterectomy without having the cervix removed should be having a pap smear of the cervix on a regular basis. The cervix is not always removed.
When I had my hysterectomy along with tubes and ovaries removed, my doc also removed my cervix. He told me to have a vaginal pap smear about once every 3 years. For some reason this tidbit of info is not related to patients very often. Cancer of the vagina is rare, but when it happens to your it becomes huge. REmember, a cervix still in place needs a pap smear. Talk with your doc and don't take "no" for an answer. Irish
Well, yes, you have lots of vent about, daisy!
Cancer, and muscle weakness, and diarrhea.....it's a wonder there's any thought of intimacy. You are taking this all better than I would.
Did the muscle weakness get worse when the Gabapentin was increased? I know when I started it and then increased I had dizziness and sleepiness and a headache.
But maybe not muscle weakness. That is odd.
Vent away. We have all been needing to vent, and often without as many scary things.....
But when we need to vent, we need to vent.
We're here listening, nodding, and sending hugs.
Hugs, elaine
Please push to get your cone biopsy done as soon as possible. You don't need the extra stress that goes with the WAIT. And I agree with an onc gyno.
Feel better and keep us posted. My thoughts are with you.
Hugs,
Maria
In no particular order, and because I didn't think you were *only* venting.
A. The nightime twitching and jerking is a sleep disorder called restless leg syndrome (RLS). If you have access to lots of doctors, and don't need a referral (in the absence of your primary and presence of the locum tenens) find a sleep center, and get a sleep study. It will be a hassle the first time. For a long time, I had RLS. Increasing Gabaenting did help. I take Methyl b12 sublingually [not regular drugstore b12] that seems to have helped the twitching.
B. Talk to your rheumy about the weakness in your thighs (also hips?) and arms. There are two diseases, polymyositis and dematomyositis, that are rare autoimmune diseases. Once you have one autoimmune disease you can get others, and your rheumy should know the test for muscle weakness. I think the test is called Creatine Kinase or CPK, and will indicate if there's an additional autoimmune problem.
C. working at home. If you decide to follow up on the advice about cancer others have give (pap smears, etc), as well as my A and B above, you will need to manage the work day differently. Try breaking it up with two short naps of 30 minutes, and see if you can extend some work days to six or seven hours. That would help with energy and taking half a day or longer to go see a specialist.
D. See if you can make your rheumy your friend who will deal with other specialists in the absence of your primary. You didn't list any big faults with your rheumy, and you do want to see him about the CPK and possibility of DERMatomyositis and Polymyositis.
E. On the issue of referrals, talk to your insurance company about whether they are an absolute requirement, or whether the insurance company can coordinate care in the absence of your pcp. I am winging it on this, and just think it's worth a phone call, even a long wait on the phone, for some discussion on care. In the long run it costs insurance companies if the people they insure can't get care for whatever is going on. Sure, it may be too many inconclusive tests; still, catching something early, like dermatomyosis, may mean long periods of remission.
F. Get the pap smear and cone biopsy!
G. Beat the heat with a two sizes too big t-shirt. Run the top half of the t-shirt under warm water, wring it out, and put it on when at work and at bedtime. Evaporative cooling will cool you down a lot!
Finally, I'll repeat myself. Make your rheumy your friend. Not in the best pal way, but go with a summary of what's been happening, and what your questions are. Appreciate anything she or he does. Ask if short (750 word) email questions are appropriate. Look up your rheumy on the web to see anything s/he has written, etc. Even ask "Why rheumatology?"
All the best,
soycoffee
You have every right to talk to the office manager where your locum and PCP practice and demand a referral to a better doctor since the first neurologist isnt treating you or your symptoms serious enough. It is not up to that doctor to undermine getting better care and I would put it that way otherwise they just dismiss your requet because it may mean additional effort on their part. Just a thought.
Kimberly
Doctors work for us, not the other way.
Push, push, push and don't give up!!
Hugs!!
Thanks for all your encouragement and sharing. Feels good to hear from those who get it.
I did have an abnormal pap earlier this spring thus starting me on this adventure! I see my gyno oncologist for the first time in about 10 days. I tried pushing for an earlier date but was stonewalled.
I'm waiting for my regular pcp to come back to get things with the referral straightened out. She is wonderful. So is my rheumy. I like the idea of getting her to help quarterback things too.
Ccourt - that obvious I live in a fairly rural area eh? (And yes, I'm Canadian, eh?)
I work at my office seeing clients, etc but I joked I should get a couch in there for naps. Maybe not a joke!
This weakness is really disconcerting. Tharrell, we sound like 2 peas in a pod! So sorry you're going through so much too.
Daisymae hang in there, my oncologist did another colpo and found nothin, guess gyno got all the lessions last time. I don't have a cervix so thank goodness gyno did a pap anyways! Dr said yearly well women exam will sufice, that vain 1 sometimes goes away by itself and sometimes turns to cancer. Lovely knowing that I now have two potential time bombs. Referred back to my regular gyno since none of that explaines my my troubles down there.
Everyone gave you excellent advice!
Oh my goodness Daisymae. You have quite a load to deal with. It seems most of us who are dealing with these crazy health problems also have multiple stressors pulling us in too many directions.
Stop. BREATHE. Breathe again and prioritize what's most important and tick off one thing at a time rather than tackling it all at once.
I know its overwhelming but try to slow down and you will get through it.
Every one here is rooting for you offering great advice and lots of shoulders to vent to/lean on.
My personal experience with the deep muscular fatigue came first. It felt like my life force was drained out. It was a physical fatigue but it wasn't making me sleepy. I got twitchy muscles sitting in a hot tub or hot bath. It freaked me out. I told many docs about it and finally one listened and did the EMG.... it was negative! Arghhhhhhh!
Please give yourself some time to slow down and tackle things a bit at a time.
Take care. Gentle hugs .
Deb