Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Sandi

Sandi 6 years 2 weeks ago #43505

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
Wasn't sure where to put this. In another conversation you said something about having paresthesia or neuropathy.

Since my 3rd treatment that I stopped I still have the symptoms that resemble paresthesia. Just wondered if you had it and is it constant. Do you ever have times where it seems worse or a little better?

I've stopped taking the ativan the doctor suggested because it was making me have issues with forgetting. These symptoms are back to driving me nuts but sometimes feels like it is better but than next thing I know it is back to driving me nuts.

So trying to figure out is it coming and going or am I just getting use to it. As soon as I deal with my bad tooth I will head to my doctors to ask him to look into this but want to be fully prepared when I do!

Any help would be appreciated.

Please Log in or Create an account to join the conversation.

Sandi 6 years 2 weeks ago #43508

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Julia:

I've had it for about 7 years now. Mainly it's paresthesia and it gets worse when it's cold or when I'm in the sun. The cold temperature seems to trigger it and my skin burns. When I'm in the sun, I get pins and needles in arms and legs that lasts for days. Sometimes the neuropathy flares up and that just happens for no reason. I think that temperatures cause my nerve endings to become inflamed. The problem is that although it is subtle compared to some people with neuropathy, I am still having muscle damage and losing sensation. When I had shingles last year, I lost the use of my hand two days before the rash even appeared, so the inflammation is constant and is set off easily.

I hope yours isn't permanent since it can be so uncomfortable. It's hard to go anywhere when you have to be so conscious of the weather all the time. I went to a wedding last December and was miserable the whole time. My skin was burning, muscles froze up and joints were stuck (last two not related to neuropathy or paresthesia). I sat there with my coat on freezing while everyone else was having a good time.

You didn't go for that 4th treatment? If not, I'm glad!

Please Log in or Create an account to join the conversation.

Sandi 6 years 2 weeks ago #43510

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
No Sandi did not go for the 4th treatment. Stopped the 3rd treatment as soon as the symptoms showed up again.

The fact that the symptoms are still here is what is worrying me. It has been a couple of weeks and I'm still getting the symptoms. Today is the first day I am wearing jeans because every time I went to put them on it made my symptoms feel worse.


So the paresthesia can have flare ups? or is it there 24/7 ?

Please Log in or Create an account to join the conversation.

Sandi 6 years 2 weeks ago #43513

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Julia - everyone is different. When mine first began, it was full blown neuropathy that lasted months. I just woke up with it one morning. My arms and legs felt like they were being stung by bees or pelted with sleet. I thought for sure it was permanent, but it did subside after a few months. I was left then with pretty much constant paresthesia and flare-ups of neuropathy here and there. Mine seems to be related to Lupus inflammation and taking anti-inflammatories helps. People who have it for other reasons have to use Neurontin or drugs that just mask it. I tried those but couldn't take the side effects on top of the other meds I'm on.

Sometimes it is permanent and it can be progressive. You should see a Neurologist now to look into possible causes. He will probably do an EMG which isn't hard at all.

It can be a very weird thing....sensitive nerves. I went to scratch my ankle last night and got a jolt of nerve pain in that area. You never know what will set it off.

Please Log in or Create an account to join the conversation.

Sandi 6 years 2 weeks ago #43514

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
Sandi - have had many EMG's I even been seen by several neurologists I was born with spina biffida and as an adult had issues with numbness and my ability to walk and stuff. At that time was tested for MS but did not have it thank goodness. I have what they call a syrinx inside my spinal column it was pressing on my nerves.

This was my reason for asking you all these questions as time goes on it seems to be going. Yet sometimes i go to do something and my Left hand starts up or my legs/feet start!

Please Log in or Create an account to join the conversation.

Sandi 6 years 2 weeks ago #43521

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Well, time to see him again then!

Please Log in or Create an account to join the conversation.

Sandi 6 years 20 hours ago #43920

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
Well saw family doctor he says chemotherapy can damage nerves and it can take 6-12 months for them to completely heal. So if in 6 months the symptoms are still here than he will look into referring me to a neurologist.

Please Log in or Create an account to join the conversation.

Sandi 6 years 16 hours ago #43926

  • Melinda
  • Melinda's Avatar
Certainly chemo can cause nerve damage - are you speaking of rituxan? I was told that wasn't chemo.

Fingers crossed this goes away for you!

Please Log in or Create an account to join the conversation.

Sandi 6 years 14 hours ago #43930

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
That is correct. Some chemos such as Vincristine are widely known to cause neuropathy and many times, it is permanent. Rituxan however, is not chemo and that is not a common side effect. I did find that it was listed, but the percentage was very small. It could have been from Rituxan and it may or may not go away. You may never know what caused it but I hope it gets better. Is it showing any signs of letting up?

Please Log in or Create an account to join the conversation.

Sandi 6 years 9 hours ago #43935

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
Sandi - Being an uncommon side effect means I would get it. That also means chances are it will go away. It will bug me enough to be aggravating but not enough for doctors to see an issue! So I will wait the 6 months and probably will be so used to it that it won't bother me anymore!

Like when the steering wheel cover bothered my hands I removed it. Have my symptoms gone or is the steering wheel cover not triggering me anymore. I'm not willing to find out just yet!

I have always had areas on my body that are numb or have funny sensations. Got so bad I could barely walk once. Neurologist says it is a syrinx in my spinal column pressing on my spinal cord causing it. That same doctor said do not lift more than 20 pounds. Than knowing my job involved lifting more than 20 pds wrote a letter stating she knew about my job and that I could do it.

She sends me to a neurosurgeon he says no surgery unless it becomes permanent damage. (due to the risk of me becoming paralyzed in surgery) So do I continue to work and make the damage permanent or do I quit and regain my walking. Duh I stop working.


I was born with spina biffida mild case no real serious medical issues. Just enough for me to spend years being observed by doctors.

They find shortened hamstrings short enough for me to have some issues but not enough for doctors to fix! Meant I had to quit dancing but life goes on!


This the reality of life something happens and you deal with it and move on! Life can suck and drive you nuts. Sooner or later you just accept and start enjoying the small things. As you age you end up loving life for its' little things.

Please Log in or Create an account to join the conversation.

Sandi 5 years 11 months ago #43941

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
I don't know. I've had it for 8 years and am certainly not used to it. I try to ignore it but some days are worse than others. It could be that your back problems started acting up at the same time and it's not Rituxan at all. I had a similar problem with spinal stenosis. A bone spur was half-way through my spinal cord and I did need surgery two years ago. I honestly don't know how much that contributed to all of it. My nerves are very sensitive anyway and react to cold or hot temperatures. When I got shingles last year the worst reaction I had was loss of muscle in my left hand due to the nerves being so inflamed. It's always hard to know what is causing what when you have so many multiple problems. They never know what causes what and they never know how to fix it. There isn't much you can do other than wait it out and that stinks.

Please Log in or Create an account to join the conversation.

Sandi 5 years 11 months ago #43944

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
This is why I believe everything I get is mild. How can I go on to ignore things when others can't. It must mean that I do not have it as bad as them!


So I am grateful that when something hits me it is only minor. Even though sometimes I get frustrated and do complain once in a while. Usually then I remember I could have it much worse so I'm really lucky for it being mild!

Please Log in or Create an account to join the conversation.

Sandi 5 years 11 months ago #43947

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
I don't think it's necessarily mild because you can ignore it, but I hope it is! It's hard to know because you don't have anything to compare it to. I thought I had mild Lupus for a long time but that changed. I did my best to keep going with all of the symptoms but they just got worse and progressed. It got to a point where I couldn't ignore it any more because I was becoming debilitated. Not that it will happen to you...

Honestly, when my neuropathy started, I was very calm about it. I didn't call a doctor, just waited a few weeks until my next appointment. It was bad at first with the bee sting feeling but it took about 2 months for me to start to get worried about it. I began to realize that maybe it wasn't going to go away and I worried more about loss of feeling and muscle than the actual pain. It did ease up though and comes and goes. The progression of loss of feeling and muscle is slow, but it is getting worse as time goes on. Nothing I can do about it, really, except keep inflammation down as much as possible.

If it parensthesia, it's easier to live with although the skin burning thing isn't pleasant and makes me feel sick a lot in the winter. It's just uncomfortable and miserable but not necessarily painful.

Please Log in or Create an account to join the conversation.

Sandi 5 years 11 months ago #43949

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
I hope that came out the way I intended it to. I was really tired when I wrote it! :unsure:

Please Log in or Create an account to join the conversation.

Sandi 5 years 11 months ago #43987

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
Came out perfect I understood clearly.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo